Wednesday, December 30, 2015

Meeting in the Middle

We took a trip to the McDonalds play area during Christmas break. This was a kind of a "rite of passage" when I was a kid. Anyone else remember? Sometime during the week we always made a stop at McDonalds for lunch. Of course, most moms these days won't feed their kids that junk, but since I'm old-school (read: old), there we were.

We probably hadn't gone into this McDonalds for a couple of years; definitely not since Chloe had been born. I was eager to see if she was old enough to play around in the tunnels (the answer: barely, and she did a little, somewhat pensively). But once we walked into the back towards the play area I remembered our history with this place.

Back when Ethan was maybe 2 1/2, I hated going there. I was frustrated when a group of friends wanted to get together and bring their kids to play because I knew what my child would be doing: obsessing over the automatic doors that lead in and out of that section. While the other kids were screeching, climbing and playing, there was Ethan: standing, staring, stepping in and out, fascinated with making the doors open and close.

As often happens, in retrospect his behavior wasn't that bad. It's not as if he was trying to run throughout the entire restaurant.

He was just acting different. And he had no interest in making friends or interacting. This bugged me.

A few years later Ethan had lost his focus on the doors but had a new obsession: worrying about getting shocked by the slide. He hated the feeling. And so he spent a lot of time asking, fretting, wondering, testing. I felt bad for the stress a simple plastic slide was causing.

And again, I felt frustrated. Why couldn't the kid just play? I wondered. Why'd things have to be so hard for him?

Then there was the day around that time when some big oaf of a kid at the top of the slide kept telling Ethan to move and he wouldn't. To this day I'm not sure if Ethan didn't understand him or didn't want to, but I remember Anna tell me that he snarled, "What are you, DUMB?!" And Anna grew indignant and snapped, "He's not dumb, he's my brother!" Man, I was so darned proud of her.

I'd forgotten all of this, until we stepped through those automatic doors and into the hyper world of kids bouncing around relatively unsupervised and full of grease.

"Chloe, come play with me!" Ethan called over and over and over. He zipped down the slide, noting briefly that he'd gotten a shocked before going back again for another trip. He cajoled Chloe to climb down to a secret spot and hang out on the mat. He boosted his little sis up and did his best to encourage her to slide down the slide (she would only go with Anna, though).

"Mamma, come in and play!" he kept yelling. That and calling to Chloe, again and again.

At one point I asked him: "Do you remember when you loved those doors so much?"

"I still do, mamma," he said, as he rushed back to the tunnels.

He has not changed who he is. He still has his fears; his quirks; his unique brand of interests. But he has also opened his world to include other people, too.

I was reminded that in the special needs world, there is no such thing as a small milestone. Something like learning to climb in and play on the slide, to be able to shut out unsettling distractions? Longing and asking for other kids play with him? This is big, very big.

I also was reminded that somewhere along the way we began to learn to meet Ethan in the middle. Our job isn't to make him typical but to help bring him to a place where he can get along better, and maybe see that some of the things we encourage him to do aren't so bad after all. And on the flip side, we need to understand that those doors were really, really cool. And that slide shocking him was really, really scary. Maybe not to other kids. But to him. We needed to value that.

Wednesday, December 23, 2015

Christmas Gets Real

"Brothers and sisters, we do not want you to be uninformed about those who sleep in death, so that you do not grieve like the rest of mankind, who have no hope." - 1 Thessalonians 4:13

The Christmas trees were on the stage, the drapes covering the sky high windows to block out the distracting sun; the poinsettias dotted across the bottom of the stage. The kids were decked in their Sunday best, ready to earnestly belt out songs slightly out of key. And this year, the choir was back for the first time in a while. We all had our festive red shirts and black pants and, two services into the three, were into this thing, having fun singing traditional favorites and timeless hymns and songs about joy.

Yes, Beethoven would have loved this...our rockin' rendition of Ode to Joy, that had the congregation standing and bopping. I nearly wanted to laugh while singing. Everything felt so alive. Praise to the Lord the Almighty? Only my favorite hymn ever (our pastor's too), and we got to sing it with gusto.

After the second service everywhere there were old friends greeting and hugs and laughter. Dan told me stories about dressing Chloe up at home only to have her get into the flour on the counter and dust herself and the kitchen.

They said their goodbyes and someone said the pastor wanted to speak with us all downstairs. I thought maybe we were going to get some gentle advice on a lyric we'd been singing not quite right or a time we walked on or off the stage at slightly the wrong time. Only, no. He had called us down to tell us we had lost one of our own.

We've attended our current church for about 12 years. Eight years ago, a dear couple, Tyren and Tiffany, and their children began serving as missionaries in Mozambique, with the church's support. Over the years they had returned at various times to rest and recharge. I tried to always catch up with them. Tiffany and I had done Bible studies together and served in the nursery. I loved to chat with her, because her faith was so strong. Everything about her was authentic. She lived what she believed. She wasn't one to just talk.

On that day, as we celebrated Christmas at church thousands of miles of away, she had helped rush her husband to the hospital. He had become deathly ill -- they didn't have real answers as to why. And, our pastor shared, he had just learned Tyren had passed away.

The air got sucked out of the room.


"And now," he continued, "You have the monumental task of going back up there and singing about joy after I share this news with the congregation."

For a moment I felt as if a boulder had been dropped on my shoulders.

There was no time. We had to go back upstairs and line up in the back of the church to be ready to walk in, joyfully singing.

All I could see in my head was Tyren holding one of his littler children, standing in the back of the church near where we usually sit.

More tears. Someone came and handed various members of the choir Kleenex.

"Why are you crying?" this dear girl with special needs kept asking, watching us all. The others didn't notice -- the families pouring through the doors, ready to celebrate, ready to worship. People were hugging; laughing; exchanging gifts.

I was reminded that grief doesn't stop this time of year. That there are many, many people watching others celebrate and feeling nothing but hollow inside. I was reminded how quickly everything can change.

How do we do this? I knew the pastor was about to get up and share. All I could do was pray...and pray...and pray, standing there and waiting.

It was time for us to go in. The music was starting. We all know the song:

O come, all ye faithful, joyful and triumphant
O come ye, o come ye to Bethlehem

As we began to walk out, peace descended. We could do this. Just not in our strength. We could sing and rejoice even while we mourned.

Peace, hope and joy to the world
Our God has come
Heaven and nature sing
A child is born
To save us, to show us redeeming love

We weren't just there to sing songs. We weren't just there to put on a performance. We weren't even there to "move" people. We were there to sing Truth. This was no longer a Christmas service, this was a question: Do we believe it?

A thrill of hope
The weary world rejoices
For yonder breaks a new and glorious morn
Fall on your knees
O hear the angel voices
O night divine
O night when Christ was born

I thought Elisabeth Elliot, the missionary who lived for years among the tribe in Equador who had killed her husband. I thought of Tyren and Tiffany, who were living their faith, who were touching lives and reaching the poor and the lost rather than just talking, complaining, looking inward. Faith expressing itself in love. What kind of love is this? What kind of story that broke into history, turned the world upside down? We sang a hymn and as always when we sing hymns I thought of the voices over hundreds of years that have echoed the same words, fellow believers who also had trials but looked upward.

Praise to the Lord, who over all things so wondrously reigneth,
Shelters thee under His wings, yea, so gently sustaineth!
Hast thou not seen how thy desires have been
Granted in what He ordaineth?

As we reached that last song, our joyful, exuberant conclusion, I realized that if we held these truths in our hearts then we could indeed explode with joy...but not a feeling, not goosebumps and shivers and an overflow of happiness that all was right in the world. No. Something more solemn and steadfast. A thrill. A promise. A deep well from which to draw. Gladness. Peace. Assurance. Hope in something far greater than this world. Emmanuel. God with us. Always.

Joyful, joyful, we adore Thee
God of glory, Lord of love
Hearts unfold like flowers before Thee
Opening to the sun above
Melt the clouds of sin and sadness
Drive the dark of doubt away

Giver of immortal gladness
Fill us with the light of day!

I knew then, as we sang, that Tyren, that mighty man of God full of faith and love, would want nothing better for us than to, even as we mourn his loss, give God the glory. That was all he lived for.

What are we living for?

To help the Haynes family:
Church of the Living God
199 Deming Street
Manchester CT 06042

Saturday, December 19, 2015

Confessions of an Imperfect Christmas Celebrator

So every year our pastor makes a point to share a little about some of the holiday traditions his family partakes in every year. He mentions getting the tree the day after Christmas; about the way his kids used to rush downstairs on Christmas morning to make sure baby Jesus had arrived in the manger; sitting and reading the Christmas story from the Bible; eating cheesecake every Christmas Eve.

I tried the baby Jesus thing a few years ago. This seemed like an easy enough tradition to implement. I got out the nativity set that goes up on our fireplace mantle and carefully set up all of the pieces, except baby Jesus, who, in preparation for Christmas morning, I carefully hid...somewhere.

I woke up before everyone else that day and realized I couldn't find him. Darn, where we was he? I thought, rifling through drawers, on top of shelves, and in other secret places. At the last minute, I found the baby tucked away behind something and put him in his rightful place.

"Look, kids!" I announced when they came down the stairs. "Baby Jesus is in the manager!"

"Huh? Oh." One or both of them said. Jesus got a perfunctory glance. "PRESENTS!" Ethan yelled.

You see, I want to be THAT family. I want to be the one gathered around the fireplace while someone reads from the Bible; the one tackling a family giving project and working together patiently on Christmas crafts.

We are not that family, though.

I desperately want my kids to start looking outside themselves and to think of giving to others. Never mind that, I long to live in a less selfish mindset. I know there are all sorts of ways we could translate that into our everyday activities. But getting everyone to participate is like pulling teeth.

We received one of those catalogs in the mail: you know, where you can donate a goat or a cow or a well for clean water and really help people far away who are in desperate need? I wanted to sit down and carefully flip through the pages and think about how we could help people, maybe talk about what it's like to live in other places and without basic necessities. Anna was halfway on board, after she stopped texting her friends. From Ethan? "Why do we have to do this? I want to play Wii!" He listened for about 10 seconds and then asked if we were done.

When you have to beg your kids to care about others, it's just not the same. And it's hard not to wonder what you've done wrong.

Then there's the Christmas card debacle. I love Christmas cards. I love getting mail and seeing pictures of my friends' kids and hearing what family members are up to. I even like semi-annoying holiday "brag" letters. This year I thought I had the Christmas card thing down. I had a picture I hadn't even had to really try hard to take of the three kids, was online clicking away, and had my cards in hand three weeks before Christmas. Only: I had gotten distracted by the kids at the end of designing my card, and in retrospect realized the text with our names was completely illegible.

Feeling stubborn and weirdly giddy that day, I decided we should send them out anyway. What did I have to prove? Our friends and family knew us. Who cared if the card wasn't perfect. First world problem!

That was all well and good...until Christmas cards from other people started arriving in the mail. Apparently, everyone had fantastic luck in the photo studios with their kids this year. I opened card after card of cute smiling kids, formal photos, dressy photos, lots of smiles, and, of course, text that was completely readable.

I began to waver. Could I really send out my crappy Wal-Mart slapped together Christmas greeting with the glaring mistake that a freelance writer and editor really had no business making?

I realized that I had to send out my cards. Because what's worse than making a dumb mistake? Acting like you're so casual and relaxed about your dumb mistake so you come off as one of those "chill" people, when really you care just as much as anyone about what everyone thinks.

As I filled out my cards, I thought of the families I was sending them to. I wished that they knew I was truly thinking of them and smiling, remembering times we'd chatted or spent together, and that I wished I could write more to each and every one.

I thought about how our family Christmas traditions often seem very much like Charlie Brown's sorry little Christmas tree...full of good intention, but sadly lacking.

Then I remembered that I like Charlie Brown's Christmas tree. (I mean, that's kind of the point of the whole story.) It's earnest; it's true; it's real.

And that I can smile through the frustrated the ones that almost came because today my older two were acting like spoiled brats and my little one kept trying to pull petals off the poinsettias at church and climb up on the stage while the big kids were practicing their Christmas music.

We are, indeed, all imperfect Christmas celebrators. Not placed here to impress anyone...but to love and be loved. Even on those days when it feels like we don't do Christmas, or anything, right.

Merry Christmas, my friends.

Thursday, December 17, 2015

These Light and Momentary Troubles

This past weekend we celebrated the marriage of two wonderful members of our extended family in Maine. There was a sweet, funny ceremony in a church decked in twinkling lights, and a festive gathering at an old stately mansion beautifully decorated for the holidays. Love was in the air. Family was all around. The day was beautiful.

Oh. Did I mention we had a toddler with us?

Writing about our experiences with Chloe at said wedding would be cliché. First, most of the people who read this blog were there, so this would be old news. And also, it's kind of obvious: this was a wedding. My child is almost two and enjoys wiggling her way out of high chairs in restaurants and swiping things off shelves in every store we visit. At church we've perhaps made the mistake of letting her stand in the back during the music and quickly bringing her downstairs to the nursery, not teaching her to sit and listen. So you can imagine how things went.

There was much chasing that day, and holding, and gently shushing. On the plus side, I think I got enough exercise to burn off dinner and the cake.

So, yeah, I don't need to drag you through the whole thing. And I'm not going to lie and say I stayed calm and serene and keeping my perspective and didn't sweat the small stuff, because I'm human. I wanted to have adult conversation. I wanted to visit with people I rarely see and spend more time celebrating the happy couple. I was grouchy.


I remember happening to be in just the right spot to glance out the window, while everyone else was unaware, and see the groomsmen, huddled in the December darkness, laughing and "trashing" the groom's car.

And while chasing Chloe we discovered a long hallway that lead into a different part of the "house," where there were huge, elaborate rooms, a grand staircase, and a large, formal parlor with a beautifully decorated Christmas tree.

And later in that room with the staircase we gathered for a picture and for a brief moment the entire family was together in that one spot, smiling and fidgeting and attempting to look good for the photographer, and Chloe was still and there was time to stop and remember that these times do not happen often, and there are few things better than gathering with the people you love.

And from that part of the house you could look to the mansion next door that was brilliantly decorated with lights that made the cousins oooh and aaah when they looked out the windows.

And there were the words from the groom's dad (Dan's uncle) before the prayer and dinner began that were so precious and full of love for his grown son that there had to be more than a few eyes welling up in that room (mine did).

And the moment when Dan and I had a few seconds to talk when we were realizing both how happy we were for the new couple but very glad that we were not starting all over again. There is something very freeing about being content where you are right now, about not pining for the past because it's never coming back, about being grateful for what experience and children and challenges have taught you.

There was, a little later, the second when we got out of the car at the grandparents' house and told the kids to stop and look up at all of the stars. Every time, especially because we see so few of them where we live near the city, every time they take my breath away. Sometimes I wonder how much more peaceful, grateful, and insignificant in a very good way we would feel if we could go outside each night and look up at thousands upon thousands of stars.

And then there was time spent with Dan's grandparents, family I now consider my own and who graciously welcome our little zoo to come and stay; grandparents I have "adopted" as my own, as I have no living grandparents now. And they've adopted me, from the beginning.

And the moments Chloe spent reading Chicka Chicka Boom Boom with her great-grandfather.

And the drive home with all of the family together, something that hasn't happened often in recent years due to Dan's work schedule, and the way that December can be beautiful even without snow, and the drive over the green bridge and river in Portsmouth, Maine and Portsmouth, New Hampshire that is always beautiful, despite the smokestacks.

I am more convinced than ever that we can never be truly happy or content if we are not able to find joy in small moments that may be hiding right in the middle of the more trying ones.

This is often more easily said than done, and this is not something I always do well. As I write right now two kids just came down the stairs way too early, and I'm annoyed.

But filled with love, too. And praying always for eyes that see differently, see beyond these "light and momentary troubles."

Friday, December 11, 2015

Believe in Them

Ethan came home with a paper in his backpack the other day. They've been talking about fairy tales and folk tales lately in second grade and this paper appeared to involve Little Red Riding Hood. I began to read Ethan's (somewhat messy) scrawl that filled two pages. Was this a story, as in, an Ethan original?

Long ago, there was a little girl name Red Riding Hood and everyone loved her. One day, Red Riding Hood's mother asked Red Riding Hood to bring muffins to her sick grandmother...

Nah, couldn't be. The teacher was probably having him practice his penmanship, I figured, or to write down the story from memory.

I kept meaning to ask him about it, but every time I'd get interrupted and forget until he was asleep or at school. I read through it several times, and after a few days, finally tossed the papers in the trash.

But a few minutes later something compelled me to ask him.

"Ethe, that store about Little Red Riding Hood -- did you write it?"


"Without copying from anywhere?"

"No, I made it up."

I went back to the trash and un-crumpled the paper.

...Red Riding Hood went through the woods and got to her grandmother's house, but she saw a wolf in the distance. Just when her grandmother's house came into sight she saw the wolf race into her grandmother's house. When Red Riding Hood went in, she was gone. The wolf ate Little Red.  

One day, the wolf was sick. He threw up. Out popped Red and her grandmother. Apparently Red always carried a jackhammer with her. Wack! Twing! Kapput! The wolf was dead. They lived happily ever after.

This, from the boy who talks about the evils of "writer's workshop" every time he gets. Was it a masterpiece? Of course not. But between the lines I could see the glimpses of so many things...a good grasp of vocabulary; creativity; humor.

I thought back to when he was little. "He's so smart!" the therapists who came to our home used to say.

I couldn't see it.

In school we'd have meetings and I always wanted to talk about what might happen, what could go wrong, which pitfalls he might plunge into (I still do that. Just less often.).

"Don't assume. He's going to surprise you," his teachers and therapists kept saying. "Look at how he's already surprised you."

But I'm not here today to write about how Ethan has surpassed expectations and blown us all away.

I'm thinking about how I need to believe in him. In my kids. In my husband, too.

I don't mean this in a sappy, "everyone wins a trophy," "you're so wonderful at everything" kind of way.

I mean I need to believe the best. I need to set expectations high but never weightier than the unconditional love they feel. I need to not confine them to a box.

I've joked with Anna about how she struggles in math and spelling. Now I've realized in the process we've kind of resigned her to just not being good at math and spelling. What if we started telling her "You can do this?"

That's different than telling her she can be a math genius. Maybe she can't (then again, maybe we need to keep our lips tighter on what our kids can't do and let them find that out on their own). But she can get better. She can work hard. She can gain more understanding.

I'll never forget what someone said to me during a marketing and public relations internship my last semester of college. "You are one of the best writers we've ever had," she remarked, "but you're also the least confident." It's something I still struggle with to this day.

There is a fine line between confidence and pride, between feeling assured of who you are verses having an overinflated picture of who you are.

But Little Red Riding Hood reminded me that believing in the people close to you is a way that you love them. That doesn't just mean believing in them to succeed and use their talents well...but maybe believing in them to make the hard choice, or to do the right thing, or to turn back when they've gone down the wrong path.

And if they let us down?

Just keep loving.

"Love bears all things, believes all things, hopes all things, endures all things. Love never ends." - 1 Corinthians 13:7-8

Monday, December 7, 2015

The Traveling Zoo

I'm sure I'm not the only parent who feels this way, but sometimes, whenever our family treks around, doing the things we have to do or want to do, I feel like we're the circus coming to town. Or a traveling zoo. It's like I can hear zany trumpets playing and a voice heralding, "Look out! They're here! You've gotta see what happens next!" Most likely it's going to be loud, and most likely it's going to be messy.

Exhibit A: Our Friday night and my early birthday dinner at On The Border. Yeah, I know. It's a chain restaurant. It's not "authentic" enough. But if sodium and fat content were of no concern, I'd eat On the Border chips and salsa for breakfast, lunch and dinner.

Of course, so would my kids...which is why once we got seated at a too-small table everyone started devouring chips like a pack full of hungry wolves. Including Chloe. Not only that, but she was double-dipping in the salsa. We got her her own little bowl so she could double-dip away. Ethan got up twice to use the bathroom and kept watching the TVs to comment on the football scores. Anna kept screeching every time we teased her about her "boyfriend" from art class. We all had to eat quickly because we had to get gas afterwards and drive back through highway traffic and make sure Anna wasn't late for her "middle school extravaganza" at the local community center at 7 p.m.

Every time we leave a restaurant these days, I end up pausing to clear the worst of the mess from under the table. Then I slink out of there quickly, my tail between my legs, silently apologizing to the waitress. This time thanks to Ethan's spilled salad dressing we had a sheen of oil spilled all over the table. God bless that woman, who is probably still marveling at how we all consumed THAT many chips.

Saturday turned out to be the only day in the next two weeks when we could get our Christmas tree. So at 9 a.m. we ended up at this tree farm on a back road where there was no one except a farmer sitting in a run-down barn, looking surprised to see anyone.

We have a knack for finding these out of the way, small (read: lame) tree farms in which there seem to be more dying trees than healthy ones and we walk around for waaaay too long trying to find something, anything that's passable. The owner is usually right there next to us, so eager to make a sale that we don't dare turn around to leave and find a better option, and so we kind of grin and bear it and mutter under our breath and cut down something that usually starts shedding needles about the time we bring it through the door. I should be completely honest here and say that Dan LIKED this year's tree farm and thought it was just fine, thank you, and that Anna and I are being "tree snobs."

So we had our tree, and the only tantrum was when Chloe learned she had to go back into the car instead of exploring and trying to play with the hand saws.

Dan had to attend to some work things, and next on my list was Wal-Mart. Wal-Mart, on a Saturday, before Christmas. Not only that, but we had to go to the Vision Center, because someone had stepped on Anna's glasses and broken them at the "middle school extravaganza" the night before when she took them off to go into a bounce house. Why she decided to leave her glasses on the FLOOR was a discussion that we indeed had, heatedly.

I told the kids, and I was in no way being facetious, that we needed to say a prayer before we went to Wal-Mart. Every time we go to Wal-Mart, I end up angry with the world. And so I asked for grace, patience, and self-control. I think we all need to say the Wal-Mart prayer before we go.

At the Vision Center, a guy cut me in line and I bit my lip, scoping out the situation. Somehow I had forgotten Chloe's snack. An old Dixie cup in my purse meant I could send Ethan for trips to get her water from the water fountain. I spotted a candy jar on the counter and decided that would be our last resort. Anna looked at lenses. Chloe kept drinking water and spilling. Ethan kept trying on glasses (another one of those things where, if I only had one kid with me, I would say hands off, but was trying to buy my sanity). We waited and waited. I plied Ethan with coins to feed into the Children's Hospital coin gadget. Chloe's sleeves were soaked. The fussiness began. "Anna, go get those Hershey kisses," I hissed. One kiss for each kid. Again, never would I have plied my older two with chocolate at Chloe's age. Soon chocolate was all over her face. Lovely.

We managed only about a half-hour wait at the Vision Center, then we dashed about Wal-Mart grabbing tree decorating items. Score! We made it!

Then came Chloe's nap and tree decorating, done quickly so we could get to the living nativity we wanted to attend followed by dropping Anna off to sleepover with a friend. "Do you see now why we HAD to get the tree when we did?" I asked Dan, looking for praise. Sometimes parenting seems to mean planning with military precision. We'd even managed to have some homemade hot apple cider while we decked the halls.

Ahhh, the nativity. Easily my favorite family tradition of the Christmas season. It's set in a park, just after dark. There are hundreds of luminaries leading up a hill to where you visit Mary, Joseph, baby Jesus, and all in a "stable" complete with wise men and animals. There are also shepherds in the fields who tell the Christmas story, Christmas carolers, a bonfire, and a warm indoor spot to get warm drinks and sweet treats.

When everything falls just into place, visiting the living nativity can feel like a sacred moment. The sky is awash with stars, the sound of carols rings out over the night, and there's nothing more beautiful than hearing little voices say, "There's baby Jesus!"

Our visit this year did not feel very sacred. For whatever reason, this year Ethan was more into jumping over the luminaries in their white folder paper bags as if he were clearing hurdles. As we passed the nativity he loudly announced, "The best part of this is the hot chocolate!" and another time just as the carolers had finished whined, "Can we GO now?"

Chloe, on the other hand, was TOO into things (yeah, we foolishly left her stroller in the car). She started yelling "Jesus! Jesus!" from the moment we got there, although I'm not sure she even knew exactly what was going on. At the manger she wanted to crawl over the fence and into the stall with the sheep and wasn't happy when we told her no. She ran away from us in the cookie room, and then we reached the carolers.

My littlest one loves to sing more than almost anything. Not only that, but the group was singing some of the same carols I'd been practicing at home for our church Christmas show. She recognized them. Slowly, she inched closer and closer to the area where they stood. Then she weaseled her way among them. "FAAALLL ON YOUR KNEES, and HEAR, THE ANGEL VOICES!" they were bellowing, and she was attempting to as well. At first, this was very cute in a "let the little ones come to me" kind of spiritual moment. Childlike innocence and all that. I let her go. Only -- she didn't want to leave. And she kept darting about around people's legs. One woman had a cane and I was afraid she was going to knock it over. I wondered if people were going to stop participating in this "holy moment" and focus only on the little one who was overstaying her welcome.

Meanwhile, Ethan was twirling around in circles, dancing and mock singing, almost running into other families. "Stop that!" I hissed. He wouldn't stop. Dan grabbed him by the hand and yanked him away, as he yelled "Nooooo!" I waited for yet another song to end and whisked in to get Chloe. "Noooo!" she also yelled, thrashing about and spilling the hot chocolate that was in my hand.

We headed away from the blessed event, the silent night that was not so silent, as Anna slinked behind us, embarrassed. Yup, here goes the zoo, I felt like saying as we walked by the crowds. Entertainment's over for now, folks. Go back to focusing on the true meaning of Christmas. 

As we drove to get Anna to her friend so they could eat pizza and talk boys and Minecraft, I felt sheepish but not mortified. I figured that was an improvement. This parenting thing is not for the faint of heart, and the more I share stories and the more I listen to others', I know that we are SO not alone. So maybe we are loud and messy. So is life. So someone judged me and I didn't make all the right parenting choices? There will be tomorrow.

And like that Christmas story that we were trying to convey for the kids, God is here for the messy and stinky and hapless, the obnoxious and distracted and selfish. Me included. Thankfully.

Wednesday, November 25, 2015

To Speak or Not To Speak

Lately I've been trying to be mindful that I shouldn't always force Ethan to make small talk. Ninety percent of the time, he thinks it's a chore and nothing more. He's already got to deal with practicing this social stuff in his group at school (never mind all day at school in general). There are times when he very nicely, very bluntly, stops answering my questions and says, "Mama, I just want to be quiet right now." How can I say no to that? Especially when there are times when I myself don't feel like being interrupted from my thoughts to start gabbing.

But then this is usually the way things end up going (from a conversation last week in the car)...

"So, Ethan, which special do you have today, gym or music?" We were driving to school.

No answer.

"Eeth? Which special?"

Nothing. Then -- "Mama, I just don't feel like talking right now. Can we have silence in the car?"

"Okay. Is the radio all right?"


Thirty seconds of silence later: "Mama, did you know a whale is the largest animal alive on earth?"

"Really? Where'd you read that?"

"In something for school."

"Hey, wait a second." I decide to call him out. "I thought you said you wanted silence."

"I do. Mamma, stop talking."

"But wait! Are you saying you only want to talk if it's something YOU want to talk about?"

"Mamma! I said silence in the car!"

"But..." My voice trails off and the car grows quiet again. For thirty seconds.

"Mama, I kept winning in soccer every day during recess!"

"Good for you." I glance at the clock. "Rrrgh, it's late. We're cutting it close."

"Mama, I don't want you to comment about us being late or saying we're close."

"Why not?"

"I just don't."

"Is it because it makes you nervous?"


Back to silence again. Then I ask, "Ethan, did you just see the crossing guard with the turkey hat?"

No answer.


He's back in his own world.

"Why is okay for you to talk about something but not me?" Silly question. More silence. And so it goes.

I can't really complain. He does initiate conversation. It just usually has to be on HIS terms. The only thing that concerns me, and I've written about it before, is how this carries over with other kids. After a while they're going to get annoyed with someone who rarely answers them or comments on things that they bring up. And while we understand his need for peace, I'm not sure how kids his age will respond if he says, "I just don't want to talk at all right now. I like silence."

Recently we told Ethan about this conference that autistic people like to attend, put on by and for people on the spectrum, where there are people with signs that say things like, "You can talk to me" or "I want to be alone." He liked that concept a lot.

At first I could picture it: Ethan attending the conference with his little sign, reveling in whatever he wants to enjoy, and the power that comes from stating that you don't want to talk and you don't have to. But then, I couldn't really see it, because I know. As much as he hates the boring small talk that comes from typical people, and as much as he wants to live in his head, he actually enjoys people a lot. As far as autistic people go, he's an extroverted one.

When we've asked him: "Which do you prefer more, things or people?" and "Which do you prefer more, being with people or being alone?" He used to say things and alone, every time. But lately, without fail, he always says, "Both." I totally get that. I feel the same way.

Saturday, November 21, 2015

The Evening (and Night, and Morning) Things Went Horribly Wrong

The other evening was the kind that in retrospect will probably be really, really funny, but at the time was a disaster of epic proportions.

To set the stage: I had a rehearsal at the church that night. Part one was for the people on the worship team that Sunday, part two was our weekly meeting with the choir to practice for our Christmas service. At the same time, I had Ethan with me, as I was going to drop him off at a nearby friend's house to play (and someone would drop him off at the church later around the time I was ready to leave).

4:55 p.m.: We leave home for what should be a 15-minute drive to the church. I knew there'd be traffic, which is why I wasn't surprised when...

5:15 p.m.: We make it a mile from our house and are sitting in a line of traffic just to get to the highway on ramp. Around then Ethan takes it upon himself to become the World's Most Efficient Backseat Driver, meaning he has to offer me advice about every seven seconds. "WHY are you in this lane, mama?!" This is punctuated by palm slaps to the head. "WHY is everyone going so slow? YOU should not be going this way. We're NEVER going to get there." Then tears, and repeat.

5:25 p.m.: We make it a half-mile down the road and are finally on the highway. Barely. I decide to text my friend to see if she can pick up Ethan at the church rather than me going the extra 10 minutes to their house. "Mama, state law is no texting in the car!" Ethan yells. "Ethan, we're not moving." "I don't care, it's the law," he retorts stoutly.

5:35 p.m.: Joy of joys, we get by the accident that caused this mess and start to move more quickly. I text people at the rehearsal to say I'm coming but will be late. "I have the music!" I add, referring to the copies of the five songs we're going to be doing, for the vocalists and musicians.

5:50 p.m.: We make it past the traffic and start flying. Just five minutes and we'll be at the church. My friend says she can get Ethan. All is well until I start to merge from I-291 to I-84 and see that traffic is at a dead stop. "No way," I mutter. I have just sat in traffic for an hour. I will be the master of my destiny, I tell myself. I will switch lanes and get onto 384 and get off a different exit in Manchester to find my way there.

6 p.m.: I remember why I hate driving in Manchester. I always get lost. I search in the dark for addresses so I can punch it into my Google maps and have my phone tell me how to find the church. The directions give me streets I don't recognize and certainly am not driving past. I keep driving. I have to find something familiar eventually, right? "Mama, WHAT are you doing?!" Ethan is yelling from the back. More tears. "I'm not going to make it there."

6:15 p.m.: The rehearsal started 15 minutes ago and I have everyone's chord sheets. I decide to call Dan to see if he can talk me down from my stress and maybe get me some directions, since I'm obviously clueless. I try to say my phone number into the Bluetooth, only Ethan keeps purposely talking to mess it up so it won't work. Finally, I lose it, "SHUT UP!" I yell. He immediately starts crying. Then I do. Creep. Hypocrite. Yelling at my child on my way to church practice. Real nice.

6:20 p.m.: By the sheer grace of God, I see a route I recognize and turn. I know where I am now. I apologize to Ethan, which he gracefully accepts, although his keep muttering incredulously, "But you said shut up!" I still feel awful. Another test, another temper lost. When will I ever learn??

6:25 p.m.: I deposit Ethan with my friend in the church parking lot, go inside and practically throw music at everyone. I then attempt to calm myself down and act like a grown-up. We sing songs that feel too high for me. Or maybe it's just that my voice isn't quite what I wish it would be. Whatever the case, I feel frustrated. I feel as if I'm trying, trying, trying and not getting things right. Not getting anything right.

9:30 p.m.: Our rehearsal part two, in the church basement, has run a half-hour late. Ethan was dropped off an hour before and I've had to talk to him 23 times about not making noise and distracting everyone. I feel bad. He should have been in bed long ago. He also apparently decided not to eat dinner at his friend's house. He's hungry and bored. People are tittering at his antics. I wonder who's wondering why my kid is such a brat.

9:40 p.m.: Rehearsal has wrapped up and I decide as a last-ditch effort to get Ethan something from the McDonalds across the street. He's barely eaten a thing since lunchtime. We wait in line for 15 minutes behind one car. Stellar mom, getting your kid nuggets and keeping him up this late, I think. Ethan cries because it's taking too long.

10:10 p.m.: It's a school night and my child is finally tucked into bed, his stomach full of grease. Our coming home wakes up Chloe, who has been battling a fever virus and not sleeping well. She starts crying and then settles herself but doesn't fall back asleep.

11:00 p.m.: I crawl into bed exhausted after talking with Dan, figuring Chloe's got to fall asleep eventually. I lay there wishing...I had a better voice, more confidence,  more self-control, more everything. Chloe keeps babbling. Her babbling is keeping me awake.

12:30 a.m.: I wonder how Chloe can still be up.

1:00 a.m.: I wonder how Chloe can still be up.

2 a.m.: I wonder how Chloe can still be up. I go downstairs and after a while fall asleep on the couch.

4:00 a.m.: I wake up and at first I hear silence. Then -- no -- I hear Chloe again. In a desperate move I decide to take her in the car to get her to fall asleep. We drive down the same road where I sat in a traffic jam 11 hours earlier. Of course, the roads are fantastically clear now, because we're the only people insane enough to be up.

5:30 a.m.: We're home after a drive that burned too much gas and resulted in Chloe almost falling asleep three times but never quite getting there. I realize my kids are going to be getting up soon for school. I realize I don't know when I'm going to get to sleep. I realize that sometimes, being a mom is really, really, really hard. There is a part of my brain that knows these are first-world problems, that is grateful THIS is what I'm upset about, that thinks about ISIS and refugees and all manner of horrible things happening in this world and knows that I need to be still. There is another part of me that just wants a banner to pop out of somewhere with confetti and someone to shout, "You are still awesome! And talented! And not a failure! And a good mom! And yeah, it's not fair sometimes. But don't give up!"

And then there's a part of me that's just really, really tired.

We go inside. I start to make lunches, because that's what moms do. The sun is coming up, and for a few seconds I manage to stop and notice: it truly is beautiful.

Tuesday, November 17, 2015

Tragedy, Melancholy and Control

"Mama, why did the Titanic sink?"

"Because it hit an iceberg."

"I know that. But why did it sink?"

"Do you mean how?"

"Yeah. How?"

I've had this conversation numerous times with Ethan lately. Yes, right now the Titanic is big around here.

Interestingly, Anna hit a Titanic phase with a bunch of her friends at exactly the same age. And I think she discovered the story the same way Ethan did -- via the Magic Treehouse book series. I love the books because honestly, they are the only other chapter books aside from the Chronicles of Narnia Ethan is interested in reading. Plus, they've broadened his world by introducing him to a number of historical events. Now we're getting questions like, "Which came first, the Revolutionary or the Civil War?" and Ethan is starting to really, really long for some kind of time machine to whisk him away to other lands and other times.

The other day, at his request, I picked up some books about the Titanic from the library. Ethan proceeded to race through them, looking mostly at the pictures. At first Dan and I were foolishly waiting for the cliché -- for Ethan to start memorizing esoteric facts about the Titanic, maybe spouting off how many feet long or high the ship was or how many tons of coal it took to keep the ship going.

But no, Ethan is not interested in the facts and the engineering and much as he is the tragedy.

Oh, I know this so well. I am one who has always been drawn to melancholy and drawn to disasters. I have never quite been able to articulate why.

When those amazing specials come on the History Channel, "The Rise and Fall of the Third Reich," the ones with chilling home movies in color of people growing up in the era of Hitler, I watch with my mouth wide open in utter fascination and complete horror.

I had my own Titanic phase for a while when I was not much older than Ethan. I got out books from the library and cried as I read about the ship tilting higher and higher while the band played on with "Nearer My God to Thee." I could see it all in my head. It was just so sad.

Back when I was in 9th grade the country was observing the 25th anniversary of John F. Kennedy's assassination, and I went on a JFK kick. I read every conspiracy theory and watched every retrospective. I became well-versed in the Magic Bullet Theory and the grassy knoll, the Zapruder film and the Texas School Book Depository. But more than the controversy, I was most fascinated by the pictures of JFK and Jackie arriving in Dallas, smiling, unknowing what awaited them there.

9/11. I can tell you the first plane hit at 8:46. I can tell you the flight numbers and exact routes of each plane, when and how the towers fell. This all seems very autistic of me. But sometimes, when I think about 9/11, I remember spilling Dunkin' Donuts coffee on myself that day and being annoyed, and the video shoot we had for a work project that morning. We were filming residents at the hospital where I worked, going about their day. I watched the B-roll after in that same sense of fascination, horror, and sadness. Everyone was just living an ordinary Tuesday morning, having no idea what was going to happen.

"Mamma, what if the Titanic never sunk?" Ethan asked in the car the other day. And then, earnestly, "I wish I had a time machine." Not only has he been reading the Magic Treehouse books, in which they travel back in time to various historical events via a time machine, but we've also been watching the Back to the Future movies.

"If I had a time machine," he continued, "I'd go back to before 11:40 p.m. when the Titanic hit the iceberg and stop it from happening."

"Where can I get a time machine, mamma?" I gently told him there aren't really time machines.

"Yes there are! I really want one! There has to be one!"

I remembered the fascinating and startling book by Stephen King about a man who discovers a portal to go back in time and makes it his goal to stop Lee Harvey Oswald from killing JFK.

I realized that maybe, this whole interest in tragedies, for both me and for Ethan, had something to do with control.

We memorize the twists and turns that led up to terrible times and feel the sting of "If only..."

"Why didn't the Titanic have more lifeboats?!" Ethan keeps demanding.

We roll the questions around in our minds. Some of us think about the sequence of events and long to jump into our time machines with the knowledge we have now, to right egregious wrongs. Sometimes all we can do is jump into our dreams.

"Mama, I had a dream last night the Titanic was sinking, but it was daytime," Ethan told me yesterday.

"Where you scared?"

"Yeah, and the ship was tilting down and down. But then I woke up."

Sometimes I hope Ethan will not go my route and will not spend too much time in the land of tragedy and What Might Have Been. But then I wonder if it's such a bad thing. Maybe it's better to learn early to embrace that we are very much human. We are not ultimately in control. We don't always know why. We can't always change things. Weighty topics for a child. But if we can learn to sit with that uncertainty and still find joy, and peace, life can still be beautiful.

Thursday, November 12, 2015

Speaking Autism

As an English major and sometimes writer/editor, I spend a lot of time thinking about words and language. We grammar geeks get really happy about certain words (conundrum and serendipity, be still my heart!) and spend too much time internally editing people's Facebook posts.

Listening to your kids learn to talk and start using words is a thrill. Anna was a riot and so creative I was always rushing to jot things she said down. Chloe's just moving into this stage and I look forward to it. And Ethan takes it to a whole new level.

When he was younger we were more focused on him just learning and using words and having basic conversation. But now he's moved on to inventing words or attempting to use words or phrases he's heard somewhere else in an appropriate way, and things have really gotten fun.

Standing on the front steps last week, admiring a terrific traffic jam that stretched nearly a half-mile down the street, he blurted out, "There's a 24-hour traffic jam out there!"

"Ohhh...what does that mean?"

"Mama, it's an autism word. It means a really, really bad traffic jam."

When we were having a party with pizza, chips, and soda, and he saw all of the grown ups' cups of soda around the kitchen, he announced, "It's soda-Sylvania around here!"


"That means there's soda everywhere. I WANT some!!"

In the car, he was throwing around something that ended up bumping him on the side of his head near his temple.

"Oww! That just hit my hip-head bone!"

It goes on and on. He sat down to a plate of chicken nuggets he really wanted to eat and said, "Oooh, these nuggets are charmed!" Charmed? I think it was something he got from a Narnia book.

When I was helping him put on his soccer shin guards he kept yelling and simultaneously laughing, "No! Don't touch my leg bone!" At first I thought it was his shin. This happened numerous times before I finally figured out he meant his Achilles tendon. Apparently every time someone touches it he gets ticklish while at the same time fearing somehow his foot is going to detach from his body. I tried to tell him it's actually not a bone but a muscle (and his foot is not going anywhere), but he's not hearing it.

And then there is "heart check." One day I found Ethan stopped after running around in the backyard, holding onto his heart and listening intently.

"What are you doing?"

"It's my heart. I want to make sure it's still beating."

"Honey, I guarantee you -- if you're talking to me, it's still beating."

"Mama! Let me do my heart check!"

Heart check is not to be confused with what he calls "heart kiss." This is when Ethan walks up to me and gives me a kiss on the heart, just because.

That's one I don't have to write down to remember, because it's so darned sweet.

Wednesday, November 4, 2015

Decoding Elmo

So, Elmo has returned to our house after a several-year hiatus.

Back when Anna was about two, Sesame Street was the first show we'd let her watch, and she quickly fell in love with Elmo's World.

For those uninitiated, Elmo's World is a section of the show Elmo the red furry monster has all for himself. He explores topics like books, food, singing, bath time, and so on with help from his pet goldfish Dorothy, friend Mr. Noodle, and various other kids and Muppet characters. Over time, we began watching Elmo not just on Sesame Street but on a nice little collection of Elmo's World DVDs we collected since Anna liked him so much.

When Ethan was little he wasn't much into Elmo -- or maybe I was so tired of him I decided to turn other things on. But not long ago, both he and Chloe were pulling old DVDs off the shelf and Elmo ended up on TV once again. Chloe absolutely loved it...

...and so did Ethan. To the point where he begged to watch more. And started asking every day after school if we could watch Elmo.

This brings up an interesting side point that's come up a lot with people who have kids with special needs: age appropriateness. Many times for numbers of reasons these kids prefer toys, games or shows that are at a younger level, developmentally, than what their typical peers are "into."

This shouldn't be a problem. Kids should be able to like what they like and play with what they want to play with. But sometimes it becomes a problem...if your child is social and vocal and you know constantly talking about whatever it is they love could open them up to ridicule from other kids. Anna has rolled her eyes and asked why he wants to watch a show for babies, but I tell her to stop.

Right now this is not the issue. Rather, I've been trying to figure out what draws Ethan to Elmo.

Anna and I both thought at first it was the predictability. Elmo always says the same things and does the same things, in the same order. And in fact Ethan was scripting nearly entire episodes for fun a few weeks ago. Elmo talking to Dorothy. Elmo making his shade go up. Elmo asking a baby a question. Elmo pulling out his magical drawer and clicking on his computer.

Ethan denied this, but when I asked him why he loves Elmo so much, all I heard was, "I don't know."

As usual, all of this Elmo interest led to me Googling the show and learning they haven't made new episodes in nearly a decade. Ethan nearly began salivating when he saw how many episodes we've missed. Then he wanted to know why on some episodes, the crayon drawings on the wall behind Elmo danced, and on some they didn't. As usual, I hadn't noticed.

"Look it up on the computer!" he exclaimed, his answer to almost everything. But alas, I couldn't find anything that specific on the computer animation in Elmo's World, at least without doing much more digging than I felt like doing.

In the mornings Ethan has been pulling up his shade, talking Elmo, trying to make his shade go up the way Elmo does when he wants to see his friend Mr. Noodle -- then doing the same thing, struggling with his dresser drawer like Elmo's drawer, who seems to have a mind of its own.

Yesterday in the car Ethan blurted out, "I think my autism likes Elmo." While we never told him it wasn't something most kids his age liked, somehow, I think he knows.

"Why is that, Ethan?"

"I think it's because all of the objects are alive."

"You mean like the shade and the drawer?"

"Yeah, I like that."


It made perfect sense. I wondered how many other kids on the spectrum love Elmo's World for the same reason. People with autism often gravitate towards objects first before people. But these objects have personalities of their own and act a little bit like people.

I love the way Ethan provides this window into what it's like to see through a different lens. And while I know if you've met one person with autism, you've met one person with autism, I am still hoping, still wondering: if he is this articulate now, what will he be able to tell us about what it's like to live autism when he's older?

Amazing things, indeed.

Monday, October 26, 2015

The Case of the Missing Football

"Where's my football?" Ethan burst in the house one day last week after school, breathlessly. "Mama, I put it right here in the dining room, and now it's gone!"

"I don't know where your football is. I didn't see it in the dining room," I said, quite honestly.

"It was. I KNOW it was right here. Where is it?" Apparently Ethan had it in his head to go outside and pretend to be Tom Brady and the rest of the New England Patriots.

I told him to look for the football. He spent five minutes and told me it had disappeared. I figured that meant he was suffering from "Man Disease" and if I looked for a minute or two I'd come across it. Only I didn't.

"My football is lost forever!" Ethan wailed dramatically. But then I let him play Wii, and all was right with the world. I figured he'd forget about the darned thing, but no. He held on to this thing like a dog gnawing a bone.

The next morning: "You HAVE to find my football today."

That afternoon, first thing through the door after school: "Did you find my football?" (Alas, an outdoor search had turned up nothing.)

The following morning: "It's YOUR FAULT my football is gone. I put it in the dining room."

That afternoon: "Did you find my football yet?"

I was starting to hate the football. It wasn't even a real one, just a blue and white, hand-sized one we'd picked up somewhere (probably Target, since we live in Target). I had dug through five toy boxes and searched under furniture. I'd even pulled apart the couch, a scary endeavor that, while not revealing a football, did produce a number of goldfish crackers, pennies, popcorn kernels, and even a few pencils.

Worse than looking for the football and not finding it was eventually realizing that the football was a bigger issue because it was part of Ethan's loop of "Limited Things to Do When I Have Nothing Else to Do." We've talked about this before. In his mind, he wants unlimited screen time. When I tell him screen time is done, I attempt to give him options for other ways he might occupy his time (i.e. puzzles, building something, reading). He usually rejects most of them. Currently his go-to activities that don't involve screens are reading, going next door to our neighbor's house (where they feed him cookies and let him watch TV), or playing outside with his football. We were missing a big part of his equation, and he wasn't happy.

To make matters worse, we've told him he can't spend too much time over at the neighbors' house anymore. They are wonderful people, but they are growing older and Ethan can't barge over there at any time and treat them like an extra set of grandparents. We caught him last week walking straight into their kitchen (without knocking, because he said "the door was opened and he saw people in there") and asking for snacks 10 minutes before dinner.

But if we tell him no next door, then well, he wants his football. And so he asked for the football about 142 times. By Sunday afternoon, I was feeling worn down. We'd just watch the Patriots eek out a win past the Jets. He'd gotten to eat some of his very favorite food (Doritos!). Dan played a board game with him. Still, all was not right with the world, because, Ethan asked the moment the game was done, "Why is my football still missing??!"

I was THIS close to just driving to Target and getting another darned football. Ethan even had some extra money. The day before they'd gone to their cousins' soccer game with the grandparents only to learn their cousins' other grandparents reward them with dollars every time they score goals. Well, of course then my parents couldn't leave the kids empty-handed, so they each came home with five dollars.

I considered going to Target and getting the football. I wondered if there was anything else we could do to dig Ethan out of his ruts. I'd even tried paying him to try a new activity in the past, but would you believe that didn't even work?

In the end we ended up getting distracted by something and another night went by without the football. In the morning Ethan asked for it again and was off to school.

Three hours later I was in the kitchen when I heard scared shrieks coming from Anna's room. Chloe had somehow gotten herself stuck under Anna's bed. The crazy thing was, it took several minutes of finagling to get her out from under there. I was beginning to worry I would traumatize her as I pushed and pulled and shoved and wondered how she'd gotten under there in the first place. At some point I felt as if I was delivering an actual baby, gingerly tugging and trying to make sure I was simultaneously gentle and firm. At long last, out popped Chloe.

Clenched in her fingers, probably making it more difficult to extract her from under the bed, was the darned football.

Yeah, it was under Anna's bed. The bed she supposedly cleaned under on Saturday. Anna, who hates playing catch and would never touch a football if she could help it. Anna, who yelled, "I DON'T KNOW where your football is!!"

This story has played out a thousand different times in our home, in any home with young children. It's the: "How in the world did THAT get THERE?" Followed by no answers, but giddy relief, because you've found a way to plug up the whining. For just a little bit. Maybe. You hope.

Thursday, October 22, 2015

Looking Does Not Always Help Listening

A few mornings ago Ethan and I were chatting about his upcoming day at school, and he excitedly mentioned he had "group" that day. Ethan is really enjoying his social skills group this year. I'm not sure why, but I'm glad. Usually each week he'll have two sessions -- one in a small group setting with a few other students who have autism, and the other in the cafeteria with a few kids from his class that he chooses. There's someone new doing his group this year (let's call her Ms. T.) and for the most part, Ethan likes her. Except for one thing.

"Mama," he said. "Ms. T. says that I HAVE to look at other people when I'm talking to them, that it will make me listen better."

"Do you think it helps you listen better?"


"But is it hard sometimes?"


I knew exactly what he was talking about. It had come up a few days earlier, when we had his annual IEP meeting. The reports from around the table were good ones and not too surprising. He's doing great in math and reading; needs to work on his penmanship; sometimes has trouble speaking up when something is upsetting him; and is generally well-liked and does fairly well with the other kids.

Ms. T. mentioned that when Ethan chooses a second grade classmate he doesn't know as well, especially, that he has a really hard time looking at him when he's talking -- and if he doesn't understand what the child is saying, will bypass the student and ask her, "What does he mean?"

"I've told him," Ms. T. shared to all of us at the meeting, "that good listening means looking, and that he has to turn himself toward the person and look at them. He has a lot of trouble coordinating all of that."

Warning bells were going off in my head. Suddenly several articles came to mind, interviews I'd read with high-functioning autistic people, in which they'd talked about the extreme difficulty many people on the spectrum have with both listening and looking at someone. It's as if the two senses can't work simultaneously. They either look and don't process what the other person is saying, or they listen without looking and can actually focus on the words.

"Actually," I spoke up. "I'm not sure that's always the case. I think looking into someone's eyes can be very overwhelming for Ethan sometimes, and he actually can listen better when he's NOT looking."

I had a vision in my head of this well-meaning woman trying to teach Ethan the "typical" way to interact, and him twisting and turning his body and his eyes towards someone in the same awkward way I'd act if someone was trying to teach me complicated dance steps.

Ms. T. nodded her head, as if she was going to politely agree but continue with her aforementioned teaching plan.

And this is the conundrum. It's true, Ethan probably CAN listen better without looking at someone. But he lives in a world full of "neurotypical" people. As he grows older we hope he will be able to recognize there are times he really needs to put aside his own preferences and look at someone (a job interview comes to mind). Those of us who know, love, and are close to him would never force him to stare at us while we're speaking. But out in the rest of the world, it's not so simple.

Which brings me back to my conversation with Ethan.

"I know it's really hard sometimes," I told him. "And I know you CAN hear people even when you're not looking at them. Ethan, I don't want you to stress out too much about this. Just do your best."


"I know YOU don't care if people aren't looking when you're talking, but do you know what happens when your friends are talking to you and you aren't looking at them at all?"


"They think  you don't care about them. And I know you really are a very kind and friendly person. Your teachers said that. So sometimes you look at them just to show you care."

I'm not sure if it's exactly the right answer. It seems as if autistic people are always the ones that have to make the social sacrifices. But it's the best I have, right now.

Monday, October 19, 2015

Lessons from Garfield

"Mom, guess what Garfield said to John!" Ethan had the paper spread across the kitchen table, reading and waiting for his breakfast.


"Well, he didn't really say it, because it was a thought bubble. But he told John to go make him a sandwich. How did John hear him if it was a thought bubble?"

Like most people these days, we'd had little use for reading the newspaper until the Hartford Courant offered us a ridiculous deal (something like $1 for a year's subscription). Now every Thursday and Sunday morning the paper magically appears in our driveway, and a fun byproduct has been that Anna and Ethan have become avid comic-readers.

I'm a sucker for the comics and so is Dan. As a kid I loved digging into a copy of the Worcester Telegram and finding the "Happy Pages," which included the comics and essays written by local school kids. Dan always goes straight for the comics and rarely reads the rest of the paper, especially these days, when we get our news from elsewhere. And now the kids fight over them. We all have our favorites. I've always liked For Better or for Worse (first I identified with the kids in the strip; now the parents). Dan likes FoxTrot thanks to the geeky central character. We all like to make fun of Prince Valiant, one of those we're-going-to-cover-one-story-line-for-a-year, badly, comic strips.

Ethan loves Garfield. And Dilbert. And The Family Circus, and really all of the comics except for this bizarre, some other state of consciousness strip called Zippy about this cantankerous, evil-looking clown who makes political and psychological observations about the world. We're quickly realizing that the comics are a great way to teach someone on the autism spectrum about humor (or the lack thereof), subtlety, and inference.

Some cartoons and more cut and dry and it's easy for anyone, Ethan included, to get them. The Family Circus and Peanuts come to mind, although sadly in Charles Shultz's later years the strip didn't make nearly as much sense. For Better or For Worse is another good one because it's usually about real-life situations that may have happened to any of us. Ethan's learned to avoid Doonesbury, as politics aren't exactly his thing, but he does love Dilbert, which he calls his "second-favorite comic."

"Really?" I asked him, wondering how much he understands about the corporate world and office politics.

"Yeah. I like the boss's crazy hair," he told me.

Above all, though, Ethan loves Garfield. I'm not sure why. Maybe because we're a family of cat lovers. Maybe he likes the way Garfield orders John around. I know he likes the thought bubbles, because they talk about those in school and he sometimes comes home with pictures of people with little thought bubbles above their heads.

And that's just it: the thought bubble really complicates Garfield, if one can call a Garfield comic strip complex. One character is speaking, and the other is thinking, but it's written in a way so that without paying careful attention you'd think that maybe John really can understand what he's thinking.

This is perfect, since part of what Ethan does in something like a social skills group is try to figure out what's going on inside someone else's head. Even just the concept that everyone else has an inner world like he does is a good one. People can be sitting silently, Garfield teaches us, while thinking all sorts of things. Sometimes they're snarky and sarcastic things.

Which brings us to point #2: sarcasm. Much of what Garfield thinks is dripping with sarcasm. We've worked a bit with Ethan on sarcasm. He's pretty good at spotting obvious sarcasm now (like "Oh, I just can't WAIT to go to the dentist and get my tooth drilled today"). He'll even call us out on it -- "That's sarcasm!" But when the sarcasm is on paper and spoken, or thought, by a cat, it's a little more tricky.

Even beyond sarcasm, in Garfield there's a lot of the cat saying one thing but meaning another. So in that strip when he ordered John to make him a sandwich, it happened at a moment when John was trying to give him love and affection.

"Why did he ask him to make him a sandwich?" Ethan asked.

"He probably got uncomfortable with John hugging him and he doesn't really know how to show his feelings, so he just ordered him around instead," I told him. This lead to a whole discussion on the point of the script, the theme running behind the themes, about the way people think cats are cool and aloof compared to dogs and like to order their owners around rather than running after them.

And you thought Garfield was just a cute little comic strip about a fat cat who likes lasagna.

Again I'm reminded that so much of what we see and read can't be taken at face value. That there are themes and motivations driving what people are communicating, and inferences and subtleties to be made and caught at every turn. We're helping Ethan learn how to catch at least some of them.

Saturday, October 10, 2015

The Homework Conunudrum

We are increasingly finding that homework is an issue in our house. Yeah, I know it is for almost all kids, and their parents. Anna grumbles about her assignments for sure. Ethan takes things to a whole new level.

I'm starting to hate homework, actually. I'm wondering if, until kids are in maybe fourth grade, they should be doing it at all.

I don't remember homework assignments until fourth or fifth grade, and then it was mostly working on science or social studies projects. Anna has maybe an hour of homework a night, which isn't so bad, and she is in sixth grade, after all. But Ethan is stuck on a bus for an hour after school. He then is expected to read for 20 minutes a night and write down what he's read (plus sometimes answer a question on the reading). Again, not horrible, because thankfully, he likes at least the reading part, and if we have to, he can read in the car on the way to school the next morning. The problem is when any other kind of assignment comes up, especially if it involves writing, thinking creatively, or drawing, cutting or pasting.

Every year around this time his school comes up with this "project" that I would've loved if I were back in school. I'm waiting to see if it rears its ugly head again. Basically it involves each child making a small "collage" of things that represent them, their family, their favorites, and so on. Each on is posted along the halls of the school after they're turned in.

Every year, the same thing happens:

"Ethan, it's time to work on your collage."


"What kind of things do you like?"

"I don't know!!"

"What about the Patriots? Red Sox? Pizza? What pictures could we find on the computer to put on here?"

"Mamma, I want to play Wii!"

"Ethan, I'm not doing this all by myself..."


This is followed by me printing out a bunch of pictures of things I think he likes, then cajoling him to cut them out, then conceding to cut half of them myself, then begging him to glue them to the paper. Then every year I walk the halls and see better looking collages and think, "Did all of the parents do these, or were there kids in this school actually motivated to DO this assignment?!"

Any additional homework Ethan brings home turns out the same way. This week Ethan's first non-reading homework was to write down his five favorite books and find pictures of them to make a collage on what kind of reader he is. Asking him to work on this was like walking on broken glass. There were tears, begging, threats, and bribery involved.

I'm starting to wonder how we're going to handle this as we move into the upper elementary grades, never mind middle school.

"Use a motivator!" people will say. True enough. In a perfect world, the afternoon would look like this: Ethan comes home from school and runs around outside to get some energy out. Then he sits down and does his homework, getting Wii or other screen time as a reward after all of his responsibilities have been completed.

I try to dangle Wii like the proverbial carrot, but this doesn't always work with a child who can be extremely single-minded. We like to call it "Rock Brain," after one of the characters in the SuperFlex social skills curriculum. Ethan himself will acknowledge when he is being "Rock-Brained." He'll get off the bus and I'll tell him to go outside. He will sit forlornly on the swing, barely moving, unable to think of anything but screen time. Sometimes he won't even eat a snack. "Mamma, sorry, I can only do Wii," he'll say. Even though three hours later he will claim he is starving and needs more to eat before bed.

If I sat down Ethan at the table to do homework immediately after school, well, first of all, that seems downright cruel after being in school for six hours and on the bus for an hour more. But even if I do, he will stare at the table, unable to focus. "Screen time!" I'll hear over and over.

And so we do Wii first. But when Wii is done, there is the struggle to transition away from the Wii, unless an Ethan-approved "Good Dinner" is waiting. THEN he'll play outside (but Daylight Savings is ending, uh-oh!), THEN maybe he'll sit down to do homework. Except: what if he loses motivation? While it sometimes works, threatening no Wii the next day is a hole I hate to dig us into. Then what in the world do I do about the next day's homework with nothing for him to look forward to?

And there's another issue. On school days Ethan seems to have a tolerance tank that runs dry very quickly. I can use what's there to convince him to do his homework...but what about other responsibilities? I'd like him to help out more with chores, but I'm working with a limited amount of motivation here. I can either beg him to clean his room, or beg him to do his homework, but trying to get him to do both leads into exhausting territory.

Someone will say, but that's how you win these battles. They're exhausting sometimes. I realize that. But some days, especially helping out two other children, my own tank is empty. And sometimes the stress that it's created, especially if I've started yelling, isn't worth it.

NOT making him do chores doesn't seem like a solution either. Then Anna wants to know why Ethan gets off so easily, and honestly, I don't want to always be tip-toeing around him and accommodating him. Yet I want to respect he may struggle with this more than the average person.

I'm starting to think the answer to this part of the problem may be that chores are for the weekend, before screen time, when homework is blessedly absent.

So this is where we stand. No, it's not the end of the world. We'll figure something out. I'm just praying the public schools realize that if you're going to push young kids all day, extend the school day by a little bit every year, push and push and push to meet whatever Common Core is requiring, and give them only 20 minutes of recess, you could go easy on the homework assignments, at least until they get to middle school.

My kid needs to be a kid, whether that means climbing a tree or playing Wii. He already barely get to be one at school. It'd be nice if he at least could be one at home.

Monday, October 5, 2015

Positvely Parental at the Chili Challenge

The morning had dawned gray, rainy, windy and downright miserable.

Ethan's soccer game had been cancelled, and the two older kids were acting like angry bears when I shared that despite the weather, I still wanted to go to the Chili Challenge on the town green. We try to go every year. Town businesses compete under their own (sometimes quite creatively decorated tent) for who has the best chili. Usually half the town is there. It's a fun fall thing to do, and the weather was supposed to improve.

They weren't having it. And I wasn't having their whining. After I lost an informal vote, I put my foot down and started acting downright parental.

"Sorry, a parent's vote overrules two kids' votes. Parents' prerogative," I said, then launched into a little Bobby Brown from 1989 ("I don't need permission make my own decisions, that's my prerogative...").

Yeah, I was feeling a little punchy. I just didn't get it. I knew, when I was Anna or Ethan's age, I wouldn't have dared to launch into the litany of whining, complaining, and back-talking that seems to well up every time they have to do something they don't want to do.

After much cajoling, we all made it into the car...and then Anna and I proceeded to get into an argument about an incident that shall remain nameless here, but resulted in lots of raised voices, huffing and puffing, tears, and unsolicited from comments from Ethan ("Is this even worse than when I bit Anna?").

"I just want to go home!" wailed Anna. So did I because honestly, this seemed like too much work. But no. We'd come this far.

"We are going," I said through gritted teeth. "We're going to take the next four minutes, and you're going to calm down, and then we're getting out of the car."

I knew we couldn't throw in the towel. They needed to learn a little self-control and a little about doing something they didn't want to do, about grinning and bearing it and learning to find something to enjoy about maybe a not so enjoyable experience.

Plus, I really wanted some chili.

We got out of the car and stepped into a huge puddle. The rain had stopped, but after a month of 80-degree September temperatures, 47 felt pretty darned cold. Anna calmed down, but Ethan started in.

"It's TOO COLD! The wind is freezing my face!!"

We pushed the stroller onto the town green. Chloe kept losing her shoes.

"Mama, two no votes should NOT get beaten by one parent vote! We voted no!" Ethan kept saying. I bought tickets and took a bite of my first steaming sample of chili.

Apparently the rest of the town was as crazy as I was. There was still a good crowd there. We saw some of Anna's friends (and Brandan C. -- or was it Brendon? -- Be still our hearts!). Ethan saw several teachers from school. Someone gave Chloe a balloon and Ethan a toy saxophone. At the Wizard of Oz-themed tent the Good Witch Glenda greeted everyone next to someone in a swirling tornado costume.

The chili warmed me. A promise of hot chocolate for the kids calmed them. Some snacks for Chloe kept her happy. On the steps of the town hall, two guys started playing 90s alternative hits from Oasis and Smashing Pumpkins. I looked over and saw they were my age. And they looked officially middle-aged. That depressed me for a moment and then I decided I really didn't care and started singing along to "Wonderwall."

As we walked and Anna ducked her head in embarrassment, I suddenly realized that there was no turning back. We had truly come full circle from my days of dragging my feet, walking behind my parents and glaring at their backs because they were so mean!

I am convinced now that becoming a parent happens in stages, and I think that's like anything in life. You have the title, but easing into the role takes time. You don't necessarily feel it. In fact, at first you feel immensely unqualified. Then you start to get the hang of things. Then everything changes again.

In little bits and pieces you start to understand a little better just what your parents may have been thinking on those days when you were convinced they were the most horrible, unfair people in the world. Over the years you suddenly realize that more and more, you're empathizing not with the child's, but the adult's, point of view.

And then there are those moments when you feel strangely, completely parental. It's not holding a newborn in your arms. For me the first was sitting at a desk in Anna's preschool while the teacher addressed me as "Mrs." That day I felt a bit like an imposter.

But that was eight years ago. As we walked on the green, my kids sniffling and whining and groaning as I sang along with Oasis, I realized after a decade I was getting this thing. I wasn't an ogre. My parents hadn't been, either. We're just imperfect people trying to do this thing, trying to teach our kids, loving our kids, and attempting to still take some moments for ourselves sometimes, too. Even in the form of some tiny cups of chili on a freezing, soggy day.

Wednesday, September 30, 2015

Too Much of a Good Thing?

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

My oldest is apparently not one of them.

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

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

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

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

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

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


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

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

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

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

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

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

Saturday, September 26, 2015

An Interesting Dilemma

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

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

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

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

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

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

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

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

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

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

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

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

This whole thing has left me feeling a little uncomfortable.

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

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

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

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

Sunday, September 20, 2015

This Loss Was a Win

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

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

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

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

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

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

"I don't want that to happen!"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

For Ethan, this was not the time for lectures.

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

No more tears. No rolling on the ground.


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

"You are?"

"Yes. Because you had self-control."

"I DID cry once."

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

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

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