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.

Wednesday, November 27, 2013

A Matter of Life and Death

I came across an old magazine article recently advising how to talk to your kids about the Sandy Hook tragedy. Then just the other day I saw a summary of the official report on the shootings had been released, as we approach the one-year anniversary. One year. It seems hard to believe. I still feel sick whenever I think about it; I'm sure most of us do.

Neither kid has ever offered up any questions about Sandy Hook, although they certainly heard it talked about and saw (brief snippets) on the news. I'm thankful for that. I'm thankful because there are questions that, despite my best efforts, prayers, and attempts, lack the answers I wish I could provide: that I can guarantee they will be safe, that horrific things like that will not happen again.

Anna has never talked about this, despite her natural curiosity about most things, but in the past few months it's been Ethan who's been asking lots of questions about death. He even approaches it in the classic style they mentioned in the magazine article: he'll express out-of-the-blue statements or concerns, then make a quick gear-shift to something completely mundane. It throws me, big-time. "I don't want to die," he'll whimper before bedtime, and follow it up three seconds later with, "Tomorrow we have art!" and a huge smile on his face.

In these discussions I always feel as if I am treading dangerous waters. My sense is to proceed very cautiously and try to straddle that line between not outright lying but not providing frightening details that will refuse to leave his mind.

As with most of life, Ethan tries to make rules about death. First, he was convinced that only old people died. I had to very gingerly tell him that sometimes (not often) other people did, too. Thankfully, he didn't get hung up on that too much, but did zero in on the age thing. Of course, he wanted an exact age, wanted to know how old most people live to. He's settled on the eighties. Most people who are in their eighties are definitely going to die soon, he's decided. I just worry about the day he goes up to one of these octagenarians and lets them know that.

"I want my body to live forever!" he tells me, most likely thinking of superheroes and powers. And of course this would be a great time to talk about God and heaven and all of that, and we do...but try explaining a concept like heaven to a concrete thinker for whom imagination is not a strength. Those pat Christian answers don't completely work. You'll be with Jesus all the time in heaven, honey. Meanwhile, he's thinking: I don't know where that is, what it looks like, or what I'll do there. "I want to live in this house forever," he has said emphatically. Heaven? At this point he can't even picture the cliché-ish angel on cloud with a harp. Heaven is not much more than a word.

A little theological break here: when I think of heaven, I imagine excerpts from a couple of great books: The Shack and C.S. Lewis' The Last Battle. Floating around on clouds all day, playing harps, walking on streets of gold while calmly all sounds rather boring to me. I've got to think God is more creative than that. In The Last Battle, which describes the ultimate fall of Narnia and the "end of the age" of that world, the characters talk about how as they enter what is their version of heaven, they see it's actually heaven that is the "real" thing, that everything that had lived in Narnia was just a pale copy of what truly exists...that the juciest, sweetest fruit they had ever tasted was dry and sour. Everything good and awesome and wonderful on earth is there -- but better. And as the character in The Shack has a moment to see from God's perspective, in heaven I envision there is a creativity we now can't fathom, where the very growing of plants and setting of the sun sends off colors and sounds and beauty we can't even take in. To me, heaven isn't a cloud. It's a completely different dimension.

Yeah. Good luck explaining that to a kindergartener.

And so I falter, trying not to sound like I'm spouting platitudes. And sometimes, trying not to cry.

"I want to know something," Ethan asked the other day, in the middle of washing his hands. "Does it hurt to die?"

Oh God, I thought. Literally. Like I know this?

"Only for a minute, hon," was all I could say. "Then you don't hurt anymore, ever."

And a few weeks ago, the tears welling in his eyes...I can't write about this without crying, too: "But I don't want to go to heaven without my family. I want to be with all of you forever."

Somehow I managed to hug him and hide my own eyes. I had to relieve some of the stress, so I told him that he wasn't going to die for a long, long time, and that he didn't need to worry about that right now. Someday, maybe we will tackle the concept of eternity, of the wisp that this life is compared to the forever, and that his family will be with him, and that any separation from each other will be like the blink of an eye.

I remember lying in bed when I was 9 or 10, trying to fathom that God always was and always will be. I thought of that page in The Last Battle, the one talking about all of them starting their life in eternity, and attempted to grasp the concept of existing without an end. My brain started hurting, and I started to feel really strange and slightly scared. Sometimes I still do.

But I know, when I was a child, I wasn't just handed clichés. My hope and prayer is that everything I share, everything I teach, comes straight from my heart, my experience, my belief, and is not just rote obligation. So for now, we talk a little bit...about God, and heaven. About death. And about reassurance and security. I don't think he needs so many words right now. I think sometimes he just needs to be held and told it's going to be okay.

C.S. Lewis - concluding words of The Last Battle

“And as He spoke, He no longer looked to them like a lion; but the things that began to happen after that were so great and beautiful that I cannot write them. And for us this the end of all the stories, and we can most truly say that they all lived happily ever after. But for them it was only the beginning of the real story. All their life in this world and all their adventures in Narnia had only been the cover and the title page: now at last they were beginning Chapter One of the Great Story which no one on earth has read: which goes on for ever: in which every chapter is better than the one before.”

Monday, November 25, 2013

Up is Down and Down is Up

Let's talk about one of autism's fringe benefits. Can you bear another 80s reference? Anyone remember that show called You Can't Do That on Television? It originated in Canada (and was shown on Nickelodeon) and was sort of a "Saturday Night Live"-type, sketch-themed show featuring teenagers. They always had a segment the stars of the show would herald as "an introduction to the opposites." What would follow was several sketches of life for a kid if the world were completely upside down - like parents forcing their kids to eat junk food or teachers yelling at students for doing homework.

(For your viewing pleasure, here's an old, grainy YouTube video. Man, I used to love that show!):

This is our house, sometimes. You see, often with Ethan, work is good. Play and free time are bad.

My boy really likes to work. Maybe not all the time. He does have his typical kid, "Aww mom, I don't want to clean my room!" moments.

But overall, if you had to ask me if Ethan prefers work or play, I'd have to say, in a lot of cases, yeah, he'd rather work. This is probably one of the biggest thing that separates him from just being any regular child.

I think Ethan prefers work for a number of reasons. Work, as opposed to play, has more structure and predictability. Work doesn't involve him coming up with ideas but rather taking specific direction. Work, at least the kind we've been doing lately, has a specific starting and ending point.

SO, for example, taking on the hellish task of raking 150 bags of leaves in our yard was, for Ethan, a challenge. A repetitive system was in place -- rake, bag, drag to the curb, repeat. And counting was involved. Put all that together, and we had a boy who would come home from school every day and announce things like, "We need to do 10 leaf bags today. That will make 110 bags. Then we will only have 40 left." Heck, we even had math thrown in there.

One of the frustrating things about Ethan has always been his lack of ability to just go play. Except in the summer when he feels more relaxed, many days are spent with a constant cajoling about using my phone, going on the computer, and watching TV, while his room full of toys sits untouched. He has flashes of wanting to play with toys that come and go with no clear link to why or what triggered them. On a day like the other one when I had to do a freelance phone interview, I had no choice but turn on some Spiderman episodes and let them run (and then, of course, feel like a bad parent).

Even more, sometimes for Ethan play is actually a chore. I've had times I've told him to go up to his room and play for awhile (especially when he wakes up way too early and I need some quiet time). He usually needs me to give him a specific timeframe (such as: "You can come downstairs at 7 a.m."). Nine times out of ten, he'll appear down the stairs at the exact minute time is up. "I played!" he'll tell me, in the same manner another child might mention swallowing his vegetables to get a reward. Just the other day, he got frustrated building a marble creation (his activity of choice up in his room) and decided on his own to take out his train tracks for the first time in months. He built a cool track, admired it for a moment and called me up to see, pushed a train around it once or twice, seemed genuinely happy and excited -- and then he was done. It was literally like a switch flipping. "Now can I come out of here?" he asked, as if he were requesting release from jail.

Of course, like the leaf bag activity, this kind of attitude has benefits. Homework is rarely a struggle. In fact, Ethan begs to do homework. He wants to complete his monthly assignments in the span of a few days. He also rarely complains about leaving the house for errands. "Aww mom, but I was playing!" is not something I hear very often. Why would he? Errands means a schedule! Tasks to be completed! He also has no issue with household chores if there is a clear reward afterward (especially the gold standard: my phone). All I have to do is dangle that carrot and he's up in his room, straightening, rushing to put everything in order so he can get his reward. His sister, meanwhile, produces such drama when asked to clean up her own "war zone," you'd think we were asking her to play with knives.

So yes, in our house sometimes up is down and down is up. It's one of those things people don't see when Ethan comes off as "just a regular kid." It's not something I can really complain about, while there are days I certainly want him to I've loved having my little buddy during leaf raking purgatory. I definitely have no problem with his love of schoolwork. It's just our normal, because really, for Ethan, play is work. And the things he finds fun (pondering how to spell words, looking for fire alarms, counting cars), might not impress the average kid. Although then I think of growing up, debating with Nate over exactly which minute we would arrive at a destination. Or counting steps while walking to pass the time. Or my love of attempting to list the U.S. states or presidents in chronological order. Maybe he's not the only one living in an opposite world. Maybe I've got one foot in it, too.

Wednesday, November 20, 2013

Call Me Crazy, But Communication Can Be Really Exhausting

We were walking up to Ethan's school not that long ago when he noticed one of his buddies up in front of him. He then did what he often does when he sees someone he's really excited about seeing -- he hid behind my back. It's almost as if the moment is too much for him and he needs time to figure out what to do.

This particular day I found myself unreasonably annoyed. Maybe because he was tugging really hard on my shirt in order to hide; maybe because I was running late. I stood there huffing and puffing at him for a moment, and then I remembered an excerpt from a book I read in the 90s. I'm not 100 percent sure, but I think it was Seinlanguage by yes, Jerry Seinfeld.

In one chapter, he talks about work and the "corporate environment," and specifically about the silly little niceties we exchange with people. The memory hits home especially now as I've been back in corporate world for a few months working part-time. I remember laughing out loud as he recounted the way some days lend themselves easier to small talk. On Mondays you can talk with people about the weekend. Friday and perhaps even Thursday you can look forward to the weekend. Wednesday you can make the obligatory "hump day" reference, but what about Tuesday? Tuesday has nothing.

I thought I was the only one who obsessed about stuff like that.

And then - this one really got me - he talked about that awkward moment when you have a brief conversation with someone you kind of know, wrap it up, and then pass by them again a few minutes later. It just doesn't feel right. You've talked already. What do you do? Exchange the little half-nod and smile? Blow on by, acting like your busy? You can't say just talked. It sounds so ridiculous, but I've been there!

Again the layers of nuance that go into communication blow my mind. Is it any wonder that Ethan gets overwhelmed?

Full disclosure here, at the risk of being judged big time. The last time I was honest about this, someone years ago in a mom's group I was attending suggested I had anxiety issues and should maybe go on medication. Thanks. That was encouraging.

Anyway, the truth is: what right have I do be annoyed? I am one who stresses about if/how to have an elevator conversation. Should I tell the woman "have a good one" as she gets off a different floor, if we've had at least one exchange during the ride?

(While we're on the subject of elevators: I once had this mentor in the corporate world who I'd meet with to discuss...I don't know...being more "professional," I guess. He suggested we ride in the elevator together and he would critique afterward the way I interacted with strangers. I just couldn't do it. The thought completely intimidated me and left me feeling that I'd start hysterically laughing every time I knew he was watching me).

There are times I prefer there be no one at the park or in the library kids area, because sometimes I'm just not in the mood to make small talk. You introverts out there will understand. I like people, and I love having conversations, but sometimes standing there and chatting and keeping a conversation going feels like I enjoy them, but I'm tired after parties...particularly the company parties Dan used to have. Those were the worst. Nod and smile; try to remember people's names; attempt to look sophisticated while drinking alcohol when my drink of choice is usually a Diet Coke. Yikes.

I imagine that stress all the time. The stress of being on the spectrum and trying to navigate the world, of being expected to engage and sometimes wanting to engage while simultaneously being exhausted by the whole thing.

"Mamma, I just don't want to talk right now!" Ethan will say sometimes in the car. And I'll feel frustrated, although I don't know why. I'll feel frustrated, when sometimes I am the one riding in the car with others, and a part of me feels drawn to just look out the window and take it all in, rather than gab. A part of me feels annoyed at being shaken out of my own little world.

Yup, my boy. I know. How could I have missed it? And so I pray for patience and understanding, in those little moments when I forget who he is, and forget who I am.

Sunday, November 17, 2013

Reasons Why a Third Baby Will Make My Life Easier

Well, here we are in November, and baby #3's arrival is T-minus 11 weeks away (or, if she's anything like her brother, closer to 9 weeks from arriving - yikes!).

Can I be allowed to whine?

I'm exhausted. I'm exhausted, and yet I know there are moms out there living my current lifestyle all the time, and I don't know how you do it. You see, all of us in our house are the type who don't like to be overscheduled. Anna can only handle one or at the most two extra activities or she loses steam. Ethan melts down when he's rushed places all of the time. Dan starts to grumble about being "overbooked" when we run from one activity to the next all weekend. And if I don't have quiet time in the morning, and a slot of time during the day to putter and try to get my house together, I feel parts of my sanity slowly chipping away. We are not the family running from home to school and work to activities and sitting down at 8pm to eat. Or when we are, all of us start to get very grumpy.

However, all of us have been asked to adjust a bit, with starting a business. For the past two months I've found myself in some ways out of my comfort zone and in other ways back in it. I've been working my old job, the one I had before leaving to stay home with Anna when she was a year old. Ironically, I've been filling in for someone else on maternity leave before having my own baby. I know the ropes. It's gone pretty well. I enjoy the people I work with.


I am not used to this. I now know why a little part of me always knew that I would not be a full-time working mom (unless I absolutely had to). I'm not really cut out for this.

Thanks to years of semi-insomnia, I tend to wake up every morning by 5-ish, no matter how late I want to sleep. By 8:20 I'm out of the house, bringing Ethan to school and rushing up to work. I leave just in time to get him from school and come home. Then with Dan working so much at the business right now, I'm on duty with the kids most nights until around 7:30-8pm. Saturdays are a mad dash to get laundry, grocery shopping and other chores done while Dan works all day. Sundays are a little better but not a break. Throw in the work I attempt to do from home for either my current job or marketing for our own business, and there's not much downtime. And now leaves have fallen in our backyard -- the bane of our existence each autumn. There are so many leaves, we can't ignore them. I've raked so many leaves this weekend that when I lay down to bed last night I literally saw leaves and rakes and piles.

I know...whine, whine, whine. This is life. I am trying to stress less and be more positive. And so, in the midst of all of this, I've realized something:

Life is so crazy right now, having a baby will probably feel like a break.

Okay, maybe I'm delusional. But I know one thing - having baby #3 will be a break from expectations.

Here's the way I see it, and forgive the gross generalization. It seems to me that many people who decide to stop at one or two children are the more orderly, organized types. The ones who know what they can handle and know when they're over their heads. These are people who talk about not wanting to be "outnumbered" by their kids. These are people who would like to maintain some sense of composure and control in their lives, to still be able to afford family vacations or still be able to get out of the house relatively easily.

I know, I was one of them. So was Dan. I find it almost laughable that we've chosen a route in which everything is now completely out of our control. This can be terrifying, or I suppose it can be refreshing. I've heard numbers of people say, "The third kid is what really threw us. I gave up trying to keep it together."

Well, I've felt that way for three months, so this is good preparation. Thank you, baby girl, for relieving some pressure. By that I mean:

1. When I have baby #3, I can better excuse the messiness of my house, because hey, everyone says they threw in the towel on really being organized after the third one.
2. When I have baby #3, at least my semi-insomnia will be worthwhile. I can nurse the baby rather than lying awake thinking of all the things I have to do. And I won't even feel tired because I'm already used to feeling tired. Woo-hoo!
3. When I have baby #3, I can feel better about the trash in my car, the forms I lose, and my lack of involvement on the PTO. The newborn excuse is better than the I just can't juggle a million things at once excuse. I am so far from SuperMom, it's not even funny.
4. When I have baby #3, I will be back at home instead of running around everywhere. I can justifiably hunker down for awhile. And that sounds, really, really nice, even if it involves diaper changes and spit-up.

Don't get me wrong. I like my job. And I'm really excited about us starting a business. I'm not the only one making sacrifices. Dan hasn't taken a full day off in four months.

It's just a really crazy time. And the holidays are coming. Yea! Seriously, that wasn't just sarcasm through gritted teeth. What's a little more hustle and bustle? I've done a lot of Christmas shopping already. Now I just have to find where I put the presents. And figure out a Christmas card...and think about teacher gifts...and...
"I can do all things through Christ who strengthens me."
- Philippians 4:13

Friday, November 15, 2013

My Little Nagger

Well, now I know how I sound.

It's no secret I have a nagging problem I've been working on for some time. Sorry, I don't have a nagging problem -- I have a problem with nagging. I have trouble stopping myself from offering what some in my family would call...unsolicited advice on certain matters, repeatedly.

I'm doing better. I'm learning to bite my tongue (at least with Dan; not so much the kids. To me they're still at the point where they NEED nagging to make it out the door or to do homework). But as my nagging diminishes, Ethan's has ramped up.

What gets me is his nagging is usually about something I've already thought of; something I'm trying to do but haven't gotten to yet. My brain works in a similar way. I nag myself all of the time. Sometimes I wear myself out listening to the voice remind me of everything I haven't done. Now I have Ethan's voice added to the mix.

He sees the hamper in the hallway piling higher with clothing. "Oh mama," he admonishes. "Those clothes are getting too high. You need to do laundry soon." Thanks, Ethan.

About his overdue library book? "You need to put that in my backpack for tomorrow. I have library. That library book has been here for too long!" I will, Ethan.

Looking outside, at the leaves that assault our front and backyard each fall: "We still have 50 more leaf bags to go! How are we going to do it? We don't have enough time!" I know, Ethan, I know.

Sometimes I find it quite funny to be lectured. The other night, as I put a new pair of socks on him before bed to keep his feet warm, he said: "In the morning, when you get my clothes, don't get me any socks because I already have socks to wear."

Other times his nagging is every bit as annoying as mine must sound to everyone else. Especially when it's about the same thing over and over. Breakfast is a good example. In Ethan's perfect world, every day he would have a bowl of maple & brown sugar oatmeal, milk, and a plate with a banana, piece of cheese, and Flintstone vitamin (this is his "big" meal of the day; he usually picks at his dinner). God forbid I forget the cheese or we run out of vitamins. God forbid Dan makes him breakfast. That's always good for a laugh because then he nags him. "Where's my banana?" "I like my banana on a plate." "I don't have a vitamin." "Why did you give me this cup to drink from?"

Thankfully, and I mean this whole-heartedly, Ethan does not flip out when things are out of order. He just stresses and whines. Very much like his mamma. And his breakfast regimen is a big one. When the vitamins are gone, Ethan is sad. "We need to go to Target and buy more," he announces every morning, forlornly. When the maple & brown sugar flavor is gone, there is even more sorrow. "Please mama, when can we go to BJ's and get more?" he'll say, while grudgingly eating a different flavor. At least once a week, I force him to change it up and eat say, a bagel or pancakes, so we don't get too trapped in routine.

As I was writing this, Ethan came down the stairs. One of the first things he did to start the day was to ask (yet again), "When are we going to take down our Halloween decorations? They need to go in the basement." We've had this discussion before. I've told him the decorations up are NOT Halloween decorations, they are fall decorations (i.e. scarecrows and fall leaves; never mind the "give thanks" banner). I tell him we can leave them up through Thanksgiving. He doesn't get it.

"Well, when are we going to move them, because they are bothering me?" he asked again.

Sigh. This is what I get, for the eons of my own nagging.

After that I went into the kitchen to make breakfast...and was summarily chided because of Ethan's watch. He noticed it was different from the stove clock and slower than the radio news at turning to 7 a.m. I made the mistake of telling him his watch was a little slow and was lectured about how his watch was not wrong (because daddy bought it at the Watch Museuem, duh!), and that I needed to make it match the time on the stove. Seeing his watch say 7:03 when the one on the stove says 7:04 is the type of thing that really bothers him.

I tried to explain the concept that his watch was almost right but just a few seconds off. This went over his head. We attempted to consult the atomic clock with the official U.S. Eastern time zone time. He still insisted his watch was right...and wanted me to change it. I found myself getting increasingly annoyed. This had gone over the top. All I wanted to do was make his darned maple & brown sugar oatmeal, banana, cheese and vitamin breakfast.

Then I remembered the minutiae arguments I've had with Dan over the years, over things like the toilet paper roll or the placement of the recycling bins. Nag, nag, nag. And again my child is a mirror. I look and have to sheepishly smile. The apple doesn't fall far from the tree.

Monday, November 11, 2013

The First Book I Ever Saw About Autism

Picture this. Circa 1985. Autism was much more of a mystery than it is today. No one talked about it on the news. I'd never met another person with autism or another person who had a sibling with autism. Heck, I'd never even come across a book about autism. And then, either at the library or a book store, I can't remember which, I saw this:

Inside Out, written by Ann M. Martin of The Babysitters Club fame (c'mon, eighties and nineties girls, you know you read the books), tells the story of an 11-year-old boy with a severely autistic younger brother. The book opens with the big brother feeling utterly exhausted after dealing with his brother's overnight, sleepless antics.

For the longest time, I wouldn't have been able to tell you any more of the plot, because I couldn't bring myself to read the rest of the book. I'm not quite sure why. All I can say is, I found this book when I was about 11 years old. For a moment, I literally had the breath knocked out of me. The feeling was similar to the first time I watched the show Parenthood (in which one of the characters has Asperger's). There was a sense of relief, of validation (oh, so it's okay to be cranky because my brother just dumped a bunch of food out of the refrigerator? You mean, I'm not an evil person?). Again, this was before the days of sibling support groups or Autism Speaks Walks. I thought we were aliens and that no one lived our lives.

But then, it was almost too much. The book hit too close to home, and made me feel things I wasn't ready to feel. So I shoved it back on the shelf and into a back corner of my mind.


Last week after her concussion Anna needed to not only stay home from school, but not read (in addition to no computer or TV), either. Anyone who knows my girl knows how torturous a prescription that is. I told her I'd find time between working (my current part-time) job from home to read to her. Wednesday morning I shot over to the library and attempted to find a stack of books she hadn't read yet...and my eyes fell on Inside Out.

I knew: it was finally time to read it. Together.

And so, over the course of the next couple of days, we would settle down into the couch and delve into this story about the boy just a little older than Anna with a little brother not much like her own. "This is what my brother was like, growing up," I said to her as we started. Anna's not one to talk about feelings, even with prodding, so I could only wonder, for the most part, what she thought. Her experience is so vastly different my own. I doubt she tells people about Ethan because in most cases, especially during brief interactions, he blends in well as just a regular kid. Her brother scored in the 97th percentile on recent kindergarten brother still cannot write his name without help. With her brother we are able to see some of the "cute quirks" of autism (the love of numbers, lights, and alarms; preciseness; the literal mind) while my brother has exhibited the more difficult side, like destructive and sometimes self-injurious behaviors.

I'm not sure what she thought, but I will say this: for those next few days as we were reading the book, Anna seemed extra especially happy to see Ethan home from school. She went out of her way to play and interact with him. And while that could have been because she was really, really bored, I wonder. I wonder if in a little part of her brain, she was feeling thankful: that her own brother could talk, and was potty-trained, and wanted to play.

And I wonder if, as we read those scenes about the big brother trying and trying to engage his little brother, and his frustration when his overtures are ignored, if she was thinking back to the times even now when that does happen, and if she was realizing it's okay. It's okay to be frustrated. Her feelings are worth something.

For the record, the book isn't exactly "PC" when it comes to autism. Some of the (ABA) teaching techniques seem downright antiquated, and demeaning. The word "retarded" is used liberally. The way autism is described seems a bit off; autism seems to exist soley as a condition meant to be eradicated. As I see with Ethan, that's not always the case. There are some truly wonderful things about his form of autism. But that is just our story, right now.

This was 30 years ago. The Judy Blumes and Beverly Clearys of the world were not touching on the subject as I scanned the stacks in the children's section of the library and bookstore. But someone did. And so, wherever you are, Ann M. Martin, thanks. Thanks for writing a book that meant something by just existing. You helped me see I was not alone, and that my feelings mattered -- even if I wasn't ready to face them at the time.

Saturday, November 9, 2013

Two Novembers

Anna just a few weeks after her first head injury

The first time, Anna was about to celebrate her 5-month birthday. November 17. Early darkness, turkey burgers cooking on the stove. I took Anna out of her bouncer seat on the floor and held her in my arms for a moment while I did something over the sink. Then I turned quickly, completely forgetting the seat on the floor. In split seconds I felt myself falling. Even as I fell I was thinking, can I keep her in my arms? I tried; I really tried. But after tripping over the chair and falling hard onto my knees, the force knocked my baby loose. I heard the sound of her head hitting the floor, and then her screams.

The next hour was a blur. Panic. I called the doctor and bundled up Anna for the hospital. Dan was still at work - I called him and let him know where we were going. Up I sped to the same hospital where I happened to be working at the time. Anna was drifting off to sleep. "Please don't go to sleep, please don't go to sleep," I kept saying and crying, trying to jostle her and drive about 85 miles an hour simultaneously. I knew sleep and head injuries went hand in hand.

In the ER she was bouncy and bubbly again. Relief. Only, one side of her head was starting to swell. Bigger. Then bigger. They did a CT scan. The site of my baby lying there wrapped up like a burrito in blankets so she wouldn't move made me want to laugh and cry simultaneously. Then there was nothing but crying when they told me she had a brain bleed and they would need to admit her into intensive care overnight.

All night, the beeps of monitors while my baby slept in a cage-like crib, nurses waking her every two hours to check on her and shine lights in her eyes. I tossed and turned in a chair. I thought about the parents who were there doing this all the time, the families of sick patients I wrote stories about for hospital fundraising videos and magazines. This was their life. Empathy swelled in me.

Guilt also swelled. Dark, oozing, suffocating guilt. I saw the scene play out in my head again and again. How could I have been so stupid? How could I have let her out of my arms? The thoughts assaulted me over and over, like the pictures in my mind I kept seeing of her hitting the floor, again and again. Weeks later, after the four CT scans and the swelling gone down and the brain bleed (in addition to a small skull fracture) were declared gone (on my birthday a month later - what a present!), I would still rock her to sleep and try not to cry. I'm so sorry; I'm so sorry, I'd murmur into her sweet smelling head.


Fast-forward nine years. Another late November afternoon. Dinner cooking. I heard a crash and couldn't figure out where it had come from. Ethan was right nearby and I'd thought Anna was studying in her room. After calling out to her, I went to investigate -- and found her crumpled in the downstairs bathroom tub. Her face and lips were white. She was crying and mumbling and talking in a disoriented voice about standing on the bathtub to see in the mirror and falling and hitting her head.

I knew we had to get her to the doctor. In that moment, there wasn't time to think about the past, yet the experience gave me the smarts to know how to call the doctor, make sure she could walk okay, get to the hospital, keep her talking in spite of her (once again) sleepiness.

Anna was petrified. She hates hospitals and doctors. She generally hates being unwell in any way. There were lots of tears and screaming. There was the hospital (a different one this time, closer to home) and lots of discussion. Should she get the CT scan again after having so many (they like to avoid them if possible)? The doctor went back and forth, researching and discussing with colleagues. Kind people came in and out and did their part to make us feel at ease. They decided to watch her closely for several hours. The swelling didn't get much worse than it already had. She managed to keep down (barely) some food and water. A neurological exam looked good. Four hours later we were headed home, with Anna wincing at every bump I hit on the road. The diagnosis? Most likely a concussion. She would need lots of rest.

It wasn't until the next day that we were both able to take this in. Isn't that the way these things always happen? You move in crisis mode, then get a breather and actually have time to process what occurred. For Anna, this meant realizing she was afraid of the bathroom where she fell. She kept going upstairs instead. She told me if she looked at the tub, her head hurt worse, and that she kept seeing pictures in her head of falling.

I knew just what she meant.

We had a series of small talks, as she lay on the couch and tried to make herself rest (not her strong point). I told her about the time my school bus got in an accident and how I'd been afraid to ride the bus after. I talked about having to fly on a plane just a few weeks after 9/11, and repeating the 23rd Psalm over and over as we lifted into the air. And I told her again the story of the day I fell holding her, and the pictures I kept seeing in my head, again and again, and the way I kept hearing the sound of her head hitting the floor.

After several hours we walked gingerly into the bathroom together. I let her stare at that bathtub as long as she dared and then we left. There were hugs and prayers. Later, she went in again. Slowly, baby steps, confronting her fears.

And now that we were moving past the moment I thought again of nine years ago. I thought as I often do how, while I wouldn't have wanted to live the experience, I was profoundly grateful to be able to use what I'd learned to help my daughter. That sleety November day the car slid under our bus...the paralyzing fear after September 11...the trauma of accidentally hurting my baby girl...they weren't just bad things that had happened. They could also be of use. Every experience can have a purpose, and it's not always for us.

I thought about the grim feeling of guilt and the way it had gnawed at me for so long. I saw the way guilt can make any experience so much more difficult to bear. This time around, Anna had been standing on the bathtub, something she'd been told before not to do, something she'd been warned was dangerous. I saw that a good deal of my terrified feelings in 2004 stemmed from feeling that this is all my fault. I thought of others who may be living with burdens on their backs.

It's no way to live.

And I remembered now what I had remembered then, after the weeks turned into months of secretly feeling I was a bad mom who had somehow permanently damaged my child. How could I have let her go? I had asked again and again. And yet in one sense that was exactly what I was asked to do, that we are all asked to do.

I could do my best, but know I had to let her go and trust God with her little life, because there would come a time when she would no longer be a baby that I could keep in my arms. Things would happen, like this other night in November years in the future, and it couldn't all be up to me. I could never be perfect. And that was okay.

I could let her go.