Monday, December 30, 2013

When the Holidays are All Wrong

"Something's always wrong...something's always wrong..."
- Toad the Wet Sprocket 

I used to get hung up on the idea of having a perfect family who would have Normal Rockwell-like gatherings during the holidays, and people didn't get it. 

"No one's family is perfect," I'd hear. "That's all just a farce." And of course on one level I knew that. I knew that that family in the Foldger's (you know that one where the older son comes home for Christmas?) or the Hallmark commercial didn't exist anywhere. But I also knew this: our holidays, and particularly Christmas, weren't like those of some of my extended family or friends. Oh, we opened gifts. We had a nice meal. But often things were tinged with How is Andy going to handle this? Should we open presents now before he starts melting down? Can we just give him something to eat so he'll stop crying? We can't go to church on Christmas Eve because he can't handle it. Will he open his presents? Should we wait for him to calm down or just open things while he cries in his room? How long should we stay with the relatives? How will we keep him occupied? 

The holidays are hard for people on the autism spectrum. Really hard. Think of it -- think of how stressed all of us so-called typical types get this time of year. There's too much...of everything. By the end of it all, most of us feel somewhat drained. The house is trashed, we've gorged on too much food, there are mounds of decorations to put away. Christmas is a special time, but there's a part of most of us that just wants to get back to normal. You can see why those with ASD, who are already bombarded by their senses, and who crave order and routine, get really thrown around the holidays. Everything is off-kilter. Nothing is the way it should be. And that can make coping really hard. That leads to tantrums, not just for two-year-olds but 22-year-olds. 

For every mom out there (me included!) who loves having the kids home but secretly will also enjoy them going back to school, there is a mom of a child with autism who is even more desperate for her child to get back to his regular routine...for not just her sanity, but her child's. 

These days with Ethan we are living a different story. He doesn't like his routine to be off (he was crying the day after vacation started about how much he'll miss school), but he is able to express what's bothering him. He also looks forward to Christmas a little more every year. Back when he was two or three we had to coax him to open presents. We would catch him easing up the stairs to try to get away from it all. These days he gets excited...and although he's not going to sit around and play for hours with his new toys like some kids (he prefers his old standbys most of the time), I'm not complaining, because I'm remembering...

I'm remembering sitting and opening presents and wondering why Christmas had to be tinged with a little bit of sadness. I was a teenager and Nate was upper elementary-aged and Andy was maybe just at the age when he should be really excited about Christmas...ripping apart the paper and diving into his toys...yet he didn't even GET Christmas. He was crying because presents were different. They weren't on the schedule. And even if he had opened his toys, he wouldn't play with them. My heart hurt for my brother. And yeah, I guess it selfishly hurt for all of us, too. I wanted to be that family in the commercial, sitting around the tree while everyone lovingly smiled and sipped cocoa. 

I wanted to just sit and enjoy dinner with family without wondering when my brother was going to bolt from the table, or thinking about how to make my parents happy because our Christmas was stressful or how to give them a break because Andy was running off again and they'd already gone after him countless times. 

I just wanted to be a kid, carefree and I admit now, self-centered. And when the holidays approached, so did a bit of a sense of impending doom. It's like that melancholy song I used to love by Toad the Wet Sprocket, years ago, that would run over and over in my head. Something's always wrong...something's always wrong. With the unpredictability of the holidays and the unpredictability of autism, I was often just waiting for the other shoe to drop rather than enjoying the season. I'm sure for my parents, it was twice as hard. 

Of course now the logical part of my brain acknowledges that no family lives up to the standard I'd idealized in my mind. The holidays come around, and people are living with the hurt of loved ones lost, of divorce and family break-ups, of abuse and addiction. Very few people are ever having a "perfect" holiday, and I'm not even sure what that means. 

But still, as we wrap up this season, I am thinking of those touched by ASD and their families. I'm thinking of kids who aren't relishing new toys but are wracked by the stress of just wanting things to go back to normal. I'm thinking of parents who are counting the days until their child is back in school because they're drained by not just the stress of the holidays, but by a family member who doesn't understand it and isn't coping well. I'm praying for siblings who don't understand why their brother or sister can't just enjoy's Christmas, for goodness' sake! I'm praying for peace -- that accepts what can't be changed, and finds joy in the small moments of what is. 

Thursday, December 26, 2013

Fantasy Football

We've been talking a lot about football in our house lately. It's Ethan's favorite sport, I suspect because it has a clock. And because we live in CT (with our roots in Maine and Massachusetts), when we talk football, we talk (and root for) the Patriots. Hence, Ethan wants to be "Ethan Brady." He likes to reenact scenes from imagined games. Usually they come down to the wire and Ethan, of course, saves the day with a touchdown. 

Not long ago I happened to mention that before the Patriots had this more recent string of good teams, they had gone to the Super Bowl a long time ago, but lost. Badly. This gave Ethan pause. "Who beat them?" he asked. "The Chicago Bears," I replied. "What was the score?" He always has to know the score. "It was 46-10," I said. Somehow, I still remember. "I was really sad."

This made Ethan stop. "Why?" he asked. "Well, because I really wanted them to win," I said matter-of-factly.

In my mind's eye as I spoke I could see that day, 27 years (No way! I'm old!) ago. You see, before the Red Sox broke my 11-year-old heart in 1986, the Patriots did. First had been the improbable run in the playoffs. My dad and uncles had been at the game in Foxboro where they clinched a Wild Card berth, and ran out onto the field with the masses, some of whom jumped up on the goal posts and carried them away. The next several games were raucous affairs at different relatives' house. I'll never forget driving up to my grandmothers' before the Patriots played the Miami Dolphins and seeing my uncle walk out of the house with a football helmut on his head yelling "Squish the Fish!" while sporting signs he'd created of various dolphin-like carcasses.

Yeah, we were die-hards. We were thrilled, although no one gave the Patriots a snowball's chance in hell of winning. The Bears were Goliath and we were decidedly David. The Bears had Jim McMahon with his sporty 80's sunglasses and the "Super Bowl shuffle" music video. The Patriots had tried to follow up with a music video of their own. "New England, the Patriots and we (we'll beat the Bears, just wait and see!)" went the chorus. All these years later, I'm still cringing in embarrassment.

Still, we had hope. And so the night before we all slept over my grandmother's, and all the next day we pondered the game and bought snacks and rigged up televisions in various rooms of the house (we had one in the bathroom, for Pete's sake). We looked at the clock in anticipation and gathered, excited, in the living room for the kick-off. And then, very quickly, things got ugly. Very ugly. And for whatever reason, the great big emotional group of us couldn't just shrug it all off as having been a disappointing end to a very good season. We had to take it personally. I thought my mom was going to start crying. Our usual pessimistic Yankee, sort of fatalistic gloom began to descend. This is how I had learned to handle disappointment, from an early age.

Two days later, we'd really have something to grieve -- the space shuttle Challenger would explode and end the lives of seven astronauts, including schoolteacher Christa McAuliffe. But that night, we watched in silence, murmuring like Eeyore about things always somehow going wrong, in the end.

All of this flew through my mind as I talked to Ethan about that long-ago Super Bowl. He drank it all in, but I didn't realize he was troubled. Later, he asked, "Think about if the Patriots played the Bears, but they actually WON?"

"That'd be cool," I answered absentmindedly.

The next day I heard him playing and doing football "play by play" again. "And there's only one second left...and he throws a touchdown...and the Patriots win the game!" my narrator was whispering excitedly. "Mamma!?" he called to me. "The Patriots beat the Bears!"

"Did they?" I asked, and then I stopped short. There was a reason he'd picked the Bears. He was remembering my story. The ending didn't sit right with him, and so he'd decided to do something about it.

You often hear people talk about pretend play and how it gives your child the outlet to imagine they can be anything or do anything. I hadn't thought so much about the way fantasy can make right a perceived wrong. Life may have gone one way, but our daydreams can go another. If I flip through my trusty Floortime book, I can see that this is actually a specific aspect or stage of pretend play. There it is, p. 97, as part of an assessment you can perform on your child's progress: "Uses pretend play that has a logical sequence of ideas to recover from distress, often suggesting a way of coping with the distress."

And so it was with Ethan, the one with rather limited imaginative skills, my boy who doesn't always "play" in the typical sense of the word. In Ethan's world, the Patriots had beaten the Bears, and all was right again.

"Ethan," I said, giving him a hug that the moment deserved, now finally seeing. "They did it! They won! I'm so happy!" He ran off to attempt another touchdown in his alternate universe. I thought of January 1986, and for once, I smiled.

Tuesday, December 24, 2013

My Very Favorite Part of Ethan's Holiday Sing-A-Long

As usual, the holiday sing-a-long at Ethan's school was a swirl of (somewhat) controlled chaos.

Picture 400+ kids crammed into the gym; parents and other loved ones squeezing on the the bleachers; rambunctious younger siblings running circles on the squeaky floor; the principal adorned with a Frosty the Snowman hat attempting to bring about calm and only halfway succeeding.

Ethan's class came in and plopped right in the middle. I saw him look for us, find Anna and I, and wave furiously, flashing that gap-toothed smile thanks to his first top tooth he'd lost the night before. The scores of kids attempted to sit criss-cross applesauce and keep their hands to themselves. The excited chatter that bubbles over when it's Christmas and vacation is coming and we made gingerbread houses and ate candy and my teacher gave me presents filled the air.

I was scrunched in a hard folding chair by a large but loving Grampa next to me who left me no room to wiggle. I couldn't complain. From the sounds of it, he had just arrived from down south somewhere; when his grandson saw him he ran to give him a hug with a smile that hinted of tears of joy.

The music started and as always in this gym with old equipment and strange acoustics, there was immediate feedback that continued throughout the song. You know that screechy sound that gives you a nails on the chalkboard feeling? I looked at Ethan and sure enough, his hands were over his ears. I saw the nervousness on his face. I prayed it would go away before his afternoon was ruined by the anxiety of waiting for more screeching sounds. Thankfully, it did.

The kids sang more of the public-school-sanctioned, generic Christmas songs: Frosty the Snowman. Rudolph. We Wish You a Merry Christmas. Then the piano was pulled out. From the distance I could just make out the top of a head of brown hair. The gym grew miraculously still. We all listened, and then came those simple notes. I sang along in my head: Jingle bells, jingle bells, jingle all the way...

There's nothing particularly special about the song, other than it being a Christmas staple. What was special was the one playing it.

"A" is a little older than Ethan. He has autism and some other medical issues. "A" has come a long way, his mom and others continue to testify. A few months ago I walked into the nurse's office to pick up Ethan and A. was there, reading flawlessly to a few staff members. I could hear the joy in their voices as they praised him.

And here he was, at the piano as he was last year, having his moment. A. can hear any tune, sit down, and play it. This day he was playing harmony as well. Grampa next to me, as with many in the room, took a little while to catch on. A. was so short, you couldn't really see who was at the piano from where we were. "I think that's a kid playing," he said to his adult daughter.

I wanted to say, not just a kid, but a miracle. As A. played, the air and my heart filled with every good and sweet feeling. All in one rush from a few simple notes there was hope and joy and faith. There was that same sense of wonder that blossomed the day years ago when my non-verbal brother began singing "Happy Birthday" out of the blue at 12 years old in the car, stringing phrases together when he couldn't put simple words together. There was that knowing that as his mom watched I knew she wasn't just seeing this moment but a string of moments leading up to this minute or two on the piano...that in a flash she had to be remembering her son as a baby and receiving a diagnosis and living with grief and fear and then the hope that came as this child who had many things stacked against him progressed and learned and began to awe those around him, including the naysayers. There was a stinging in my throat, that ache of memory of schools and lack of knowledge and of a different time when I was young, when autism was just a word on a paper to most people, when no one would imagine taking a moment out of the school assembly filled with rambunctious typical kids to slow down and honor the simple gift of a special child.

Yet here, here A. was, and I'd like to think that even those who didn't know somehow knew down deep that they should pay attention. Something in the air called for it. In the stillness, God, you are there...a song I heard once whispered.

This was my very favorite part of Ethan's holiday sing-a-long. A. fumbled over a few notes and finished strong. Applause echoed off the gym walls.

We finished our singing that afternoon with "This Little Light of Mine." No other song would have been as fitting. Let it shine, A. Let it shine.

Sunday, December 22, 2013

Glorious Imperfection

The term schadenfreude refers to a feeling of enjoyment from seeing or hearing about the troubles of other people. That's not why I'm writing about.

But, as I read in a book once and have referenced on this blog before, there are times when things happen to people that are for them to learn from. And then there are the times things happen, little or big, that are for someone else to learn from. Someone like me.

Where am I going with this? Following today's Christmas service at church, I'd like to compose a brief letter of sorts, an ode to the inconsequential that was, indeed, not so inconsequential after all. And so, I say a heartfelt thanks... the worship team who somehow managed to sing lyrics to three different Christmas carols that had slightly different words in many places than the words up on the screen. You didn't even know, at least during the first service. But after my initial confusion and trying to figure out what you were singing and why things weren't congruent, I realized it didn't really matter. Everything you were singing was truth. If I didn't know the right words, I could be still and sink it all in instead of huff and puff my out-of-breath self to try to keep up. the little boy with the big solo, the one who belted out his words with angelic innocence, then proceeded to enthusiastically wave to family and friends, call out "Hi Andrew!" (whoever he is) and hop all around: thank you for your exuberance. This is the great thing about kids; little ones. They forget to be embarrassed. They forget to be cool or collected or follow all of the social rules. They show joy unabashedly. They sing with all of their hearts, even if they're out of tune. the woman with the magnificent voice who had several solos, thanks for singing through what was probably a cold or sinus trouble or a strained voice. Sometimes the less polished, the more beautiful we are. If I want perfection, I'll pay to see it. What I heard was beautiful. It helped soften the slight sting of a back-handed compliment from a fellow church member not long ago. She said something about being moved by my voice even if it wasn't perfect. I didn't need anyone to tell me it wasn't, and I knew where her heart was, but sometimes it helps to see someone else singing in all of their earnest, glorious imperfection to understand a little better.

...and to the quartet of instrumentalists who played so sweetly and beautifully but had to start the last song entirely over because one of you began playing the wrong song: I empathized with you, but also felt a measure of gratefulness. You see, I am the type of person who over-analyzes my mistakes. I've been known to recall simple exchanges I've had with a person and replay over and over the dumb thing I said; the lame remark that could have been replaced with something much more clever; the comeback that wasn't one. It's no different when I am the one up on stage. I am not as bad at this as I used to be. I no longer feel paralyzed by my mistakes. But there are still times when I think, Why did I? Why didn't I? If'only I'd...

What you all wouldn't know is that last week was my last week to sing with my team before having the baby. And our team leader decided to, as a "goodbye present" of sorts, have me lead one of my favorite songs ever ("Everything" by Lifehouse). We haven't done this song in forever at church. The last thing I wanted to do was muck it up. Yet the first time around all of us in the band did just that. And then I was so sure I could fix things for the second try (we only had two services that day due to snow). This would be my last time singing in who knows when. I'd talked to people about when to play and where to go in the song. I was ready. I was sure of myself...and then I proceeded to get so lost in enjoying and singing the song that I completely missed where I was supposed to go. And it was another one of those things that the average person wouldn't have even noticed all that much or cared about, but it bugged me, because again it reminded me of the way I can be an airhead and not always hit the notes just right and do something dumb despite my best efforts and yes, be human.

And so, to the little guy and one on guitar and the woman and her voice and the singers with the not-quite perfect words, again, I say thank you for providing me again with a much needed gift: perspective. What I didn't completely learn after my mad dash to the advent candle three weeks ago, I'm continuing to learn now.

What is the point of Christmas if we've already reached perfection?

Is church the place for the perfectly coiffed or for those in desperate need, those in realization of their lack?

I can believe that there is still beauty in glorious imperfection. God obviously thought that way, when He looked at us. And when I do that, I can see the miracle in the midst of the mundane. I can sing here to myself in my voice that really could have better range, that would never have made it far on American Idol or The Voice or anywhere but with my own church family, sing those words to my favorite song:

How can I
stand here with you
and not be moved by you? 

Would you tell me
how can it be
any better than this? 

Thursday, December 19, 2013

He Can't Take the Tension

What do these two things have in common? 

Ethan is petrified of both.

I used to love the game Simon. I see it and immediately think of the 80s and childhood and playing games in my best friend Ryan's attic (that and Hungry Hippos, too). When I saw a small travel version at Target, I picked it up for Ethan for Christmas last year. I thought he'd love the game, since he's got a great musical ear and exceptional memory.

I forgot about one thing: the anticipation factor. Over the past few years we've learned that Ethan is not a fan of anything that involves a noise or surprise coming out of nowhere unexpectedly. The first time he heard Simon buzz when he picked the wrong note, Ethan was done. Simon was left to collect dust. Somehow at some point Simon ended up in my car (seems like that's always the story with my car) and recently Anna found it. While I ran back to house to get something before we headed out, she apparently grabbed Simon and began playing, knowing this was akin, to Ethan, to using some sort of medieval torture device.

I came back a few minutes later to find him hunched in his seat, terrified. "Please, make her stop playing that!" he begged. He looked ready to jump from the car and run for the hills.

"Annaaaa," I said in that voice that told her I knew exactly what she was up to, and she grudgingly put the game aside.

Flipping through channels to catch the weather forecast last week, I came across an episode of "Family Feud." I used to love watching it when I was a kid, so I lingered for a few moments. I could see Ethan getting increasingly antsy on the couch next to me. I knew what was going on before he said a word.

"Mamaaaa," he said slowly, twisting in his seat, eyes anxious.

"You don't like the big X, do you?" Right then, the host said it: "Survey says?" The answer wasn't up there.

The big red "X" in the box appeared, with the buzzer sound effect.

Ethan put his hands over his ears. "We have to change this!" he pleaded.

"Why does the X bother you so much?" I asked. I always ask, and he is not able to articulate. Another "X" appeared on the screen. Ethan covered his ears, almost writhing in discomfort.

"It's okay buddy," I told him. "We'll change the channel."

When the buzzer sounds, when the noise he hates goes off, he is locked in. He goes from a regular kid just chilling out to fight or flight response. If I didn't feel so bad for him, I'd want to laugh, but I try to remember: this is a phobia of sorts. It's the way I feel when I see a spider crawling in my car and can't get it and wonder if it's going to do something horribly creepy like drop on my head.

As much as he loves the predictability and look of fire alarms, he is petrified when they go off and startle him. He can't stand thunderstorms -- not because of the thunder, mind you. The thunder comes after the lightning. He can predict when thunder is coming. It's the lightning he doesn't like, he tells me. It's those darned unexpected flashes.

And then there are video games. Ethan runs out of the room while watching certain video games if there is a part in the game where the player can unexpectedly, suddenly have something jump out at him or "die." This is the one that makes me a little sad. His teachers are always blowing off his lack of play skills by saying, "He's getting older. All of the boys start relating to each other playing video games, anyway. Try not to stress. He'll love that." Yeah, I hear you. He does love video games and it is a way for him to find some common ground and chat with other kids. Only - how would that go off, if he's hanging with a group of kids and has to keep running from the room because of a sound effect or moment in the game that sets him off? How would they react to find him in the other room, pale-faced and wild-eyed, waiting for a certain part to conclude?

I guess this all has to do with dealing with feelings of tension and anticipation. Again - those who say people on the spectrum don't feel things as intensely have got it wrong. In some case, they feel too much or don't know how to properly regulate their emotions. Right now Ethan can't take the concept of something coming out of nowhere. I guess I would liken it to that feeling when you're at the top of one of those amusement park rides where they shoot you up and then torture you by waiting at the top before sending you flying back down. You know the drop is coming and it's going to be bad. You just don't know quite when.

Imagine living with that feeling often rather than just for 10 seconds one summer day. I think of Ethan as a baby, always quick to startle, and as a toddler, staring at that Jack-in-the-Box, holding his breath waiting for the moment of truth.

He has dealt with this for a long time. It can't be easy. I am hoping with time he learns creative ways to deal with the tension. I hope we can give him the tools he needs to feel the unease without letting it paralyze him. And I hope others will be compassionate about what on the surface seems like a funny kind of quirk. Panic isn't funny, whether it's about being in the dark or closed in spaces or about buzzing "x's." I hope those now nameless, faceless, video-game-playing boys in the future remember that.

Sunday, December 15, 2013


We sat in one of the empty classrooms, nearly three years to the day when Ethan started in the public school system. I've gotten to know Mrs. D. and Mrs. M. well in these three years -- and more importantly, they've gotten to know Ethan. Each year around parent/teacher conference time, I make an effort to meet with them, the speech and special ed. teachers, in addition to Ethan's regular classroom teacher.

"We're running out of things to talk about," one of them joked, as we briefly discussed his IEP, of goals met and new ones developed.

"Seriously," the other said, her voice quiet. "He's all set for this year - but when we meet about next year, I don't think (the principal) is going to want to keep him in special ed."

We went on to talk. Next year, they both felt, he'd probably be discharged from OT. In his social skills group it's hard to keep him on board with the other kids because he's picking up concepts so quickly. His only current behavior problem is acting silly in line. His academics are nearly at the end of the year level across the boards.

I sat there and listened, and I didn't know what to feel. Or maybe I felt too many things. Maybe I was thinking of that day three years before when we met about his placement and were told he needed to start in the special ed. classroom, that he couldn't handle the preschool setting. Maybe I was thinking of Dr. Milanese and the day he was diagnosed and that little stark room with those God-awful toys and clipboards. "Ethan is not your brother," she had told me, but I still felt angry enough to hit something, because what did anyone really know except the future is unknown?

This must be said: This does not mean Ethan is "cured" of autism. He may very well grow up, as a fellow autism mamma blogger was told about her autistic daughter when she was diagnosed, "to lead a solitary kind of life." He still often prefers objects to people. He still doesn't have great play skills. He still has "interesting" obsessions and has trouble relating and responding to other people at times.

This also must be said: Leaving special ed. doesn't magically erase his issues. It may actually complicate things. We may have more trouble accessing services, if he needs them later on as the demands of school become more complex. It's tempting to look at this way, but going this route is not necessarily the holy grail.

But our son is treading a much easier path than many who have received the same diagnosis. I'd be lying if I said I wasn't tremendously relieved, and thankful, and grateful.

I'd also be lying if I said there weren't many times I throw my eyes skyward and ask, "Why?" Not in a demanding, whiney way. Just in a human way.

I know there was nothing we did to "deserve" this. That's the hard thing to get around. Despite what many believe, I don't see there being a natural formula here, a 1 + 1 = 2, a I Did This So I Got That. I can't stand on a pedestal and say, well I just know it was this treatment or that therapy. A friend once asked, "Do you think that Ethan would have made the strides he's made anyway, with or without early intervention?" The question gave me pause, because at first I was so sure the answer was yes. But...I don't think it's as cut and dry as it seems. There are plenty of kids who receive plenty of intervention, much more than Ethan had, and do not make much progress.

Is this really "deserved?" My son was diagnosed with moderate autism at just 22 months old and now has autism that is not usually distinguishable to a stranger's eye four years later.

My 31-year-old brother with autism has never been able to communicate more than his basic needs.

It's interesting, this whole concept of fairness. Life is so incredibly unfair. I think that in sorrow and also in joy, when I see gifts that have been given, and those that have not. It's natural to do this, when we are looking at life through human lenses.

People live with cancer diagnoses, with pain that dehibilitates, day after day, year after year. A young mother just getting her life together dies and leaves two boys essentially alone to grow up. Infidelity out of nowhere detonates a marriage. Good people die; some wait patiently for miracles that don't seem to come; evil rules in unlikely places like elementary school classrooms, and wicked people live long lives and seem to get away with every wrong they've done.

In an interview awhile back, Bono from U2 talked about the concept of karma vs. grace.

"You see, at the center of all religions is the idea of karma," he said. "You know, what you put out comes back to you: an eye for an eye, a tooth for a tooth, or in physics—in physical laws—every action is met by an equal or an opposite one. It's clear to me that karma is at the very heart of the universe. I'm absolutely sure of it. And yet, along comes this idea called grace to upend all that 'as you reap, so you will sow' stuff. Grace defies reason and logic."


So what to do with this idea of grace vs. deservedness, this concept that turns our way of thinking upside down? I think there comes a time when we can't continue to think and reason and search for explanations to the unexplainable.

To God's grace, to good that seems undeserved, what can we do, but open our arms and receive?

And as for the bad -- to do the same. Maybe not embrace the pain or the wrongs or the disease or the heartache, but receive the grace and strength to walk through it.

So I will look at Ethan and resist the urge to question or apologize or predict the future...

...and will just whisper to the One above, "Thank you."

Wednesday, December 11, 2013

Grace, Revisited

Why do we light two candles?
The first candle reminds us of the light of hope that the prophets had in their
expectation of a Messiah. The second candle reminds us of the dark night. when Joseph and Mary found light and warmth in the stable. 

From our church's advent candle reading, week 2
And this is why I tend to prefer Thanksgiving over Christmas.

There we were, 10 minutes before leaving the house on Sunday morning, and I was screaming. You could say I was screaming because Anna had goofed off in the shower for 10 extra minutes, ignoring my plea to get out, or Ethan didn't have his shoes on, or because there were too many baskets of laundry sitting waiting to be put away, but really I was screaming because I didn't want to mess up the advent candle reading.

So here's the scoop: Every year on each Sunday of Advent our church invites a family to walk down the aisle at the beginning of service, light the appropriate candle, say a few words about why we light the candles this time of year, read a scripture, and invite everyone to sing a Christmas carol. We did it once when Anna was about 4 and Ethan was a baby. We hadn't done it since because:

- As Ethan grew older and got his diagnosis, I grew increasingly nervous about how he'd act up there doing something so completely out of the norm.
- One of my friends had a bad experience that involved her kids running around, despite her best efforts, and I just had a sinking feeling that would be us.

For two years I convinced Dan we should politely decline, but this time around he really wanted us to light the candle (he's much more of a lover of tradition than I am). And deep down, I knew Ethan could probably handle it. I guess the question I should have asked was, would I?

I figured we needed to have a game plan: namely, having the kids (Ethan in particular) watch the family lighting the week 1 advent candle the Sunday before so they'd know what was coming the next Sunday. That would have worked great, except both kids came down with strep throat that weekend and we all missed church. Drat. I went searching for YouTube videos and only found grainy images of families doing things that sounded nothing like our advent reading, in churches that looked nothing like our church. Ethan was not impressed and kept asking me to get rid of that and find him his favorite songs.

Then we realized that due to our schedule and Dan needing to work we were actually going to attend our church's 2nd service but do the advent reading for 3rd service. That meant we just had to get there on time (no easy task, it seems sometimes) and we'd be able to watch the 2nd service family do their advent reading, and Ethan would understand what the heck we were talking about, and wouldn't freak out, and I wouldn't do something embarrassing and air-headed.

Hence, the rush to get out of the house Sunday morning. Of course, this day of all days Anna would wake up late and eat breakfast late, and stay in the shower daydreaming. Of course Ethan would not be able to figure out how to button his shirt he never wears. Of course I would lament my lack of cute Christmas-y maternity clothing, bringing on a minor depressive episode, and Anna would announce she had no good tights.

And so there I stood, screaming. Because we all needed to get out of the house to the darned church and do the darned candle reading and sing about peace and love and all of that. Darn it. I literally drove 85 mph down the highway to get there. Yes, officer, I imagined myself saying. I put us at risk so we could watch a family light the advent candle at our church. Don't ask. We hopped out of the car, burst into the foyer, and I heaved a huge sigh of relief to see the 2nd service family just embarking on their walk down the aisle. "See Ethan? Watch. This is what we're going to do next service." I whispered as we stood in the back and watched. Eureka - he got it! We were ready. We could do this. We walked all the way in, everyone started singing "O Little Town of Bethlehem"...

..and then the gnawing feeling began. It chewed at my insides; it whispered all around; it seeped in and snickered that you are a fraud

I knew it, I knew it all even as the morning was unfolding. I knew the irony of freaking out about going to church, about losing it and yelling because we were going to light a candle and talk a little more about the greatest miracle the world has ever seen.

I knew the joke -- that here we were in the season of peace on earth and I couldn't even find peace at breakfast. I knew the joke was on me. I knew, once again, I'd lost any sense of self-control even as I was trying so desperately to teach it to my own kids.

What good is it? I could almost hear the book of James saying. What good is your faith?

My mouth had to choke out the words to sing, because all I could think is that this is what I was demonstrating: that Christmas was about putting on a show, performing tradition without meaning, about stressing to the point of breaking, about doing instead of being.

What good is your faith?

We'd left the Christmas carols behind and started singing a song we've song many times before.

Your love never fails, never gives up, never runs out on me.
Your love never fails, never gives up, never runs out on me.

The words ran over me like water on parched ground that for awhile has nowhere to go. It takes awhile to sink in.

Your love never fails, never gives up, never runs out on me.

And then I saw the man in front of me. He was there with his family, and I'd never seen any of them before. His hair was waves of white and gray, but his face was younger.

We sang, and I watched him wipe his eye with a weathered hand. There were tears there. He leaned forward; shoulders slumped, and his wife took her hand and began rubbing his back in a comforting way, in small circles. 

His moment of weakness, his opening his heart a crack, helped me open mine. The tears he was wiping from his eyes helped my own eyes to open to the truth that we are all failures in our own efforts. Christians are not people who have the answers. We point people to THE answer. It is SO not about us. It is so not about being a good person or steeping ourselves in tradition or following a set of rules...or doing a flawless reading in front of the church...for what? To what end? We are nothing. As the verse says, and the song we used to sing long ago: Lord if you mark our transgressions, who would stand? 

I stood there in all my imperfection, in another failed morning in a string of failed moments and listened as the song ended and someone spoke of letting the love of God flow over us like a river. What good is my faith? I remembered that it's all about God's love. And before we extend it, we have to receive it.

Sometimes that means forgiving yourself. So I looked again at those hands of the stranger in front of me, brushing away tears, and I did.

Friday, December 6, 2013

Evolution of a Name

Out there in baby world, I'm realizing that choosing the perfect name for baby is, for some people, close to an obsession. There are websites and message boards dedicated solely to the concept. There are rules many studiously follow (have first/middle names of varying syllables; don't end a first name with the same syllable a last name starts with, and on and on). So many people seem quite concerned with giving their child a unique name that isn't anywhere near the Top 100 list.

I personally can think of worse things that could happen than having another child in your kid's class have the same first name, but okay.

Anyone looking at our family can see Dan and I haven't really ever embarked on the Herculean task of finding the perfect, one-of-a-kind name. Our baby naming process usually goes like this: I have fun looking through big books of names, write a bunch of possibilities down, he nixes most of them while throwing in some completely ridiculous suggestions for good measure. Finally, we both decide on something we can live with. "Anna" was a compromise for me. You know how a name can get ruined because of someone from a million years ago you might associate it with? Yeah, that. "Ethan" is a ridiculously popular name...but we could only agree on that and "Jacob," another ridiculously popular name, so Ethan it was, decided in the elevator on the way up to Labor & Delivery.

Now we are onto baby #3, and the kids aren't exactly thrilled with our policy to not share baby's name in advance (hey, there has to be some element of surprise, right?). We already know the gender (I hope! Can't even think about the possibility of a mix-up). All we will tell them is that we are sticking with our rather strange policy of using a name that you could find in the Bible if you really, really looked for it. This one's probably the most obscure of all, as far as the Biblical connection is concerned. Of course, this stumps them, big time. Not related to his knowledge of Biblical names, but Ethan keeps asking if her name is "Sarah." I think it's the only girl name that ever comes to his mind. Anna likes to come up with all sort of outlandish possibilities.

Awhile back, she protested: "We have to at least come up with a nickname. We can't keep calling the baby 'it.'" This was before we knew the gender, so I suggested stealing from an old Beverly Cleary book. I used to love the Ramona Quimby series, and in one book, when Ramona is just about Anna's age, the mom has a baby and they call it "Algie" the whole time she's pregnant. I have no idea why. I think it's from some sort of poem they quote in the book.

"How about Algie, from Ramona Forever?" I asked. Some days I'm too tired to try to be original.

"Algae?" Anna wrinkled her nose, thinking of science class.

"No, not algae. Algie." I showed her the excerpt from the book.

So Algie it was, until we found out Algie was a girl. Then Anna christened her "Algina." I saw the looks people gave us one day at the library when Anna announced, "Oh, baby Algina would LOVE this!" I get the feeling Algina wouldn't be a fan favorite...and I'm pretty sure it's not on that Top 100  name list.

Of course, in typical Ethan fashion, he didn't really like or understand the whole Algie or Algina thing for awhile. The concept of a temporary nickname is a little difficult to understand. And sometimes he gets hung up on pronunciations...

Which is why you will now see him most evenings, curled up on the couch next to me, and speaking lovingly to my stomach: "Hello Allergy. This is your big brother."

Yes, Algina has morphed into Allergy. It's second nature now.

I wonder if he talks about her at school...the impending arrival of his new sister, Allergy.

I wonder if he's going to be so into the routine that her actual name is going to throw him for a loop. I have tried to tell him this is just her temporary name. But of course, he didn't read Ramona Quimby, so I don't know if this is sticking.

Whatever the case, he'll get it eventually. He's fairly flexible. Except about the smell of dirty diapers. There we may really have a problem. But that's a story for another day...

Tuesday, December 3, 2013

Deja Vu All Over Again

When Ethan had his last visit with the developmental pediatrician, she handed him a stack of coloring papers and asked if he wanted to color while "I talk with mom." Ethan obliged -- with one crayon. He proceeded to make the same approximate scribble on every page, making a pretty good dent in the whole stack.

I love how sneaky these doctors can be, because of course the pile of papers wasn't just a distraction to keep Ethan busy, it was a test. Later, as we talked, she had to a chance to weave the pile of scribbles into her diagnosis. Yes, Ethan should still be defined as having classic autism, she said, due to certain characteristics such as repetitive behavior and lack of creativity or flexibility, as evidenced through the darned coloring papers. At the time, it kind of annoyed me.

Now, I see she has a point.

See this picture?

Oh, if Dr. Milanese could see it now! Look at the variety! Look at the colors! By looking at it, you would not know: 1) Ethan now colors this way because his teacher posted a list of several steps to making a "good picture," and he now reminds himself of the rules when he starts coloring and 2) This exact picture has come home from school at least 6 or 7 times. Same person in the middle. Same tree. Same blue sky. Same sentence: "I am playing outside."

"Where did you draw this?" I will ask him.
"Writing center," he answers. "We get to draw whatever we want."

"Why do you always draw the same picture?" To this I get no answer. One time, I gently urged, "Maybe next time you could try to draw a different picture." He was so proud, when he brought the picture home. It was the same tree, sky, and person. But a swing had been added. "I am playing on the swing," the sentence read. "I did it different this time," he said proudly.

Okay, so creativity is not my boy's strong point. He's about as different from Anna in this area as night from day. Fine, Dr. Milanese. You made your point.

For the first part of the year, Ethan's homework assignment each week was to pick a word, write it several times, then draw a picture about the word. Ethan's choice of words was, well....interesting. We had ice cream and pizza, red, pencil, chair and curtains, to name a few.

"Okay, what are you going to draw?" I asked him enthusiastically the first day. I think pizza was the word. Ethan decided on a man at a restaurant reading a book about pizza. So the next week, when we sat down to draw a picture about ice cream, the first thing I heard was: "He's at a restaurant. Reading a book about ice cream." And every time, when I ask him to add more detail to the picture, he says, "Oh! I forgot the floor. And the ceiling. And walls."

Now they've graduated from pictures to stories. We just got a paper home, and it's official. This week, Ethan is being asked to write a story and draw a picture about it. Ethan didn't get this at first. "We're going to read a story and write about it," he told me. Uh, no buddy. "You're actually going to write your own story," I told him. He didn't know what to say to that. Uh-oh. I can see it now. I'm sensing he's going to want to write a story about playing outside. Next to a tree. Or be reading a book in a restaurant. Under the ceiling and above the floor.

I don't mean to mock my now six-year-old. I actually opened his progress report yesterday and had tears in my eyes. He's already at or above where he should be by the end of the year in many areas. His teacher's quite impressed with his math ability. She called him "a confident writer." There were glowing comments from his music and art teacher. I can't tell you how grateful I was when I looked over those two pages.

But now I know the true definition of concrete thinker. And as a writer who has often dealt with an overactive imagination, I try to wonder what it's like to sit down to craft a story and have no new, as his teacher says, "enjoy solving math problems" (shudder) have amazing ability to memorize rules and apply them while simultaneously having such gaps in picking up certain pieces of information, like how to color or to chat with someone, inherently.

Yeah, yeah, Milanese, I know. And I know what will happen on our next visit. Ethan will color pictures just the way he should be, because he's now learned the rules. He's been taught. Yet you'll have something new in your bag of tricks, some subtle way to prove why he's not a typical six-year-old. And you know what? Ethan will master that rule, too. And the next. What he lacks in originality he makes up for with other ability. He's going to surprise us all. He already has.