Sunday, December 30, 2012


Ethan came running, his face drooped into the biggest of pouts, tears pushing from his eyes.

"I lost again!" he wailed. "Anna got all of her guys into home, and I didn't get any of mine!" They'd been playing the game Trouble, one of his Christmas presents.

He ran into my arms. I hoisted him up into my lap and encircled my arms around him as he cried.

I wished I could express to him that things weren't as bad as they seemed. But while my perspective may have been different, there was nothing that could have stopped me from giving him that hug.

As he sniffled and rested his head on my shoulder, I wondered if this is how God sees us. I wondered if this is some of what God feels, when we ache and hurt, lacking the vision to see the big picture.

This is what I love -- not just that God sees and knows what we cannot know. That is only part. But also -- that He longs to be a God of comfort, no matter how small or seemingly insignificant our hurt, our pain.

I felt Ethan take a deep breath and sigh. He let it go. We sat a moment longer and I patted the back of his soft fuzzy snowman jammies, thankful for the moment, of simultaneously loving and feeling loved.

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort,  who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God."  -2 Corinthians 1:3-4

Wednesday, December 26, 2012

Tension of Creation

On Christmas morning, the world was white. Gentle, fat flakes were falling. The kids screeched with delight. I'd never seen that before on Christmas; snow like the movies.

The past two weeks have been something out of the ordinary. There was the Sandy Hook shooting, miraculously then punctuated by amazing acts of kindness all over. Someone bought kids at Anna's school hot chocolate. I felt first-hand the infusion of joy that comes when you decide to give something to someone least expecting it -- and to give and to love, rather than sit and dwell on evil.

Then my mom ended up in the hospital, and no one knew what was wrong. Her symptoms weren't clear-cut and were baffling to doctors. They could have indicated something very seriously (and yes, terminally) wrong...yet she had to sit in a hospital close to Christmas all weekend, waiting and wondering.

Through all of this, as I always do, I thought.

When I was a kid, after awhile, I had this idea. I had this idea that everyone else was having a Christmas like a sitcom, like a commercial. Someone somewhere was having a perfect Christmas, but at our house, there was feeling less than relatives who had more money, or feeling odd because we had a family member who could care less about Christmas ("Andy! Come back here!" was often a call at our house, while everyone else was joyfully ripping paper. And someone would almost inevitably say to just let him go. This seemed wrong).

And so, thanks to that and very many other things, I grew up thinking there was something fundamentally wrong with me, with us. The Disney commercials told me. There they were! These families with kids excitedly jumping up and down, getting surprised with a vacation on Christmas morning.

Has anyone ever noticed that we live in a world where everyone is trying to create magic? For the longest time I thought it was because everyone else really had it wonderfully.

The scales came off my eyes, ever so slowly. The process began when I worked for the Children's Hospital. There were the stories I covered: on the boy who had a part of his brain removed due to epilepsy; the pre-teen who'd had the stroke; the twins born too early -- the one who didn't make it. These people from all walks of life had experienced heartache, yet they didn't see that as any sort of condemnation of who they were.

I don't know, but I think they still felt loved.

When Ethan was smaller, all of my thoughts of Disney and perfect families came rushing back. Little kids were supposed to be excited about the gifts under the tree and playing with new toys. They weren't supposed to rip open one present, throw it down on the floor, and then want to hide off in the other room, overwhelmed.

Over time, I've seen more than ever that there are many things in this world that are not supposed to be, but are.

Little children are not supposed to die in their first grade classroom.

People are not supposed to be in the hospital, hurt and hurting, and especially at Christmas.

Families are not supposed to be split apart by rifts that last years and result in nothing but silence and cold.

Like the 26 acts of kindness created in honor of Newtown, like the movies that make the snow fall on Christmas Eve as friends connect and families embrace, we attempt to create magic not to reflect the way everything is perfect but because everything is so very broken.

Everything will always be at least a little bit broken, in this world, I am convinced.

Sometimes broken is the best way to be. That's when God can work.

Last week a young man with Asperger's spoke at an autism group I attend. He said something about the way people with Asperger's sometimes have trouble relating to others because of the intensity of their emotions. And while it wasn't quite in the context of the story he was explaining, I suddenly saw myself. I saw that little bit of autism that I think resides in some of us, the way I respond to things and feel things, the way I think and perceive and analyze, the way other people sometimes just don't get me. They want to go shopping and I want to decipher the deep meanings of the universe.

I don't know what was different this time, but it was. Different, even broken, was really, truly okay. Not because I never need to change or work on anything, but because I am still loved right where I am in the present moment.

And I saw that I know that if I am okay, if I know I am loved...then it's okay, on Christmas morning to let Ethan open his gifts and then run straight to the computer game he's been playing for several days, because that's his routine. He can be who he is.

If I know I am loved, I can accept me in all my intensity, for who I was made to be. I can love other personalities for who they are. I can choose to forgive those who have mistakenly or intentionally hurt me or my family. It's not about me, or us.

On Christmas Eve, my dad called to say my mom was going to be okay. They had answers, they had a plan of treatment.

We will never have all the answers. But when I looked out at the snow on Christmas morning, I knew that we can be broken and still made new. We can be broken and still be beautiful. It starts with love. And when we accept what was freely given, we are free to extend that to others. When we forgive, both ourselves and others, we are freed and free to see something amazing at work that we never otherwise would have noticed.

Sometime the funny places we hear you
Droning in the middle of the broken
Sometimes the funny places we hear you
In imperfect world

You're funny
You're funny like that
You will not be controlled

You live in the tension
You live in the tension
You live in the tension
of creation

You decide what's beautiful
You decide
You decide what's glorious

-- "You Decide What's Beautiful," Jason Upton

Friday, December 21, 2012

A Matter of Time

Times, dates, numbers...they've always been big things around our house. I don't mean "our house" as in "life with a child on the spectrum." I'm talking way back, to when I was a kid.

Sometimes Ethan reminds me a lot of my brother Nate at his age. Nate was the kind of kid who always needed to count what he needed on the dice to get Broadway in Monopoly. Or what he needed to spin to avoid the big slide in Chutes & Ladders.

Nate (and our entire family, really) loved to have little time guessing games, often on family trips. And so we'd be driving to Maine and looking anxiously at the clock because we'd all predicted a different moment that we'd cross the big green bridge...or biting our fingernails wondering if we'd arrive at my grandmother's house at 11:37 or 11:39...or meticulously timing shortcuts to see if they were really worth the extra effort and were indeed shortcuts.

I was the calendar person. Tell me a person's birthday and I remember it forever. I still remember birthdays of my classmates in fourth grade; of McDonalds managers I worked with as a teenager.

I was all about time, too. One of my favorite books in junior high was a Lois Duncan thriller called "Locked in Time," about a family who didn't age who eventually gave themselves away to story's protagonist because she had "an uncanny awareness of time."

An uncanny awareness of time. That was me. I could always look at the sky or "feel" and just know approximately what time it was. I never wore a watch. As a commuter student in college, for a few years I took the bus (looong story) and rarely missed one, even without clocks. I just knew. Dan and I still play the game in restaurants...he asks me to guess the check and the time, and while my math skills would never impress anyone, I'm always eerily close on both.

Ironically, Dan is a math genius yet doesn't share these abilities. Anna could care less. Ethan, on the other hand, is picking up where my family left off.

I rounded up a Big Y calendar to hang in his room and he makes sure to remind me to flip it over.

He remembers everyone's birthday, or more importantly, their age, and will take to making comments like, "I like Grampy very much because he is 54 and is older than Grammy. She is 53." It makes him very happy when the men in his life are older than the women, because Anna is older than him and I am older than Dan. He sees this as incredibly unfair.

He has followed in Nate's footsteps with the board games to the point that much of the game involves him counting. Really, right now it's just Chutes & Ladders (Candy Land and Hi-Ho Cheerio don't work that way) but it's a mixture of cute and infuriating. There's only so many times you can hear, "If you get a 6 you will go down the slide" before you just want to play the darned game, already. He'll be getting Sorry and Trouble for Christmas, so this should be fun.

While Ethan doesn't engage in too much typical independent pretend play, his own creative version usually involves numbers. One of his favorite games right now is a game in which his two hands (Tico and Petey) hit his toy cash register over and over. Somehow he's figured out a way to hit some button and watch the numbers magically multiply. Then he will keep wanting to show me: "Mom! Look how many points Tico has!"

He also discovered a timer on the CD player/radio that's mounted under our microwave in the kitchen. The other day I heard him playing a Christmas song from the CD over and over while he kept fiddling with some other buttons. Finally, I asked him what he was doing. I thought he just really liked the song (I too am one of those types who will play a song 25 times consecutively if I really like it).

"I want the timer to win!" he announced. I looked closely. Apparently, he was using the built-in timer on the clock radio and setting it at different times when the song started to see which finished first. "Yea!" he cheered when he finally found a setting on the timer that lasted longer than the length of the song.

In the summer, Dan brought Ethan to a wonderful place -- a watch museum in Waterbury. At the time, I didn't hear much about it from Ethan. I think he was impressed most of all with the museum's elevator. But Dan bought him a watch that day, and, apart from a month-long stint when the watch was lost behind his bed, Ethan and the watch have been inseparable. He even wants to sleep with it.

For whatever reason, this watch is about 45 seconds fast. He knows this, but doesn't want us to change it. When Anna tells him his watch is too fast and not quite right, he says, "Don't say that. You're hurting my watch's feelings."

At school, we gather in the hall until the secretary dismisses all of the afternoon pre-K kids and parents to walk down to their classrooms together at 12:30. The secretary has taken to checking with Ethan before she sends us all down. "What time is it, buddy?" she'll ask, and he'll happily glance down and report.

Numbers, dates, times. This is a lot of our world right now. I know that in time, obsessions like these are the type of thing that could set Ethan apart from his peers. Right now, though, I'm glad he can enjoy them unabashedly. This is who he is. The more I watch the way his little mind works, the more I'm convinced that it IS different...but that I continue to see shades of similarity in myself, in others around me. I want to always remember and hold on to both of those truths. I have the feeling they will be of equal importance, as the years go by.

Tuesday, December 18, 2012


We pulled up to Anna's school yesterday, a drizzly Monday morning. There was a police car parked near the front door, and the officer was standing on the front steps, chatting with the principal. I was moved by the gesture, but couldn't help but feel sad.

Later at playgroup with Ethan in the school down the street, the classrooms we always walk by were unnaturally quiet. Thank you, thank you, thank you, I silently whispered to each teacher we passed. In the big room where the little ones were playing, I looked around and thought about where I would hide if a shooter entered the building. I'd jump out the window that cranks easily open, I decided, dropping Ethan down before me first.

The kids were at the water table, picking up ice cubes with tongs. I saw a mom look over at Ethan. Most of the people there know he is on the spectrum.

Don't ever, I whispered in my head, whispered to all of them. Don't ever look at my son and think of him, the one who did unspeakable things at Sandy Hook. Please.

When the horrific happens, we justifiably become enraged. And in our humanness, we long to direct that rage somewhere. I remember the afternoon of 9/11, sitting in the Disaster Command Center at the hospital where I worked, watching the smoke fill the sky from New York. "Whoever did this, we're going to kick their ass," a security guard watching said with ice and fire in his voice, staring at the television, staring at nothing.

Dan showed me the blurb on his phone on Friday night, as we were watching Anna's Christmas program at school. They're saying he's on the spectrum, he whispered, and my heart sank lower than it already was. I thought of the way the rumors fly. I thought of the way people with autism already struggle so to make their way in a neurotypical world. I thought of how easy it would be for people living in the fog of shock and outrage and grief, to look at ASD impairments like "lacks empathy," "shows little emotion," "prone to tantrums and outbursts" and take the leap that those must have led to cold-blooded murder.

Two days later I watched the president speak during a memorial service in Newtown. His words, and the governor before him, were full of grief and comfort. They spoke of spiritual things. They whispered of hope. That was needed, and necessary. I was also, though, left wondering after some of the veiled comments on changes that must be made. I don't doubt that stricter gun control laws may be a fruit of this horrible act. Perhaps that is not such a bad thing. But still...

I wonder about our knee-jerk reaction. I wonder about our need to find "the cause" of a crime, and what it says not just about our need to exact justice but also to feel in control. I wonder if in the midst of intense grief and wanting to right wrongs and do something, we can find it in us to step back and really look, really see.

We have to, we must see that there are no easy answers.

We can talk about guns...but someone with evil intent will find a way to get their hands on one, or if they can't, they'll resort to something else.

We can talk about our violent culture, of the glorification of gore in the media, in movies and television and video games (and indeed I think we must), but for every one person who played violent video games and turned to violent crime, there are millions who did not.

We can talk about autism, but anyone who knows anything about autism will tell you (and thankfully, many experts have been given a voice in recent days in the media) that people on the spectrum are not naturally prone to violence. They may have trouble relating to others -- but if anything, they are overwhelmingly more likely to harm themselves.

And we must talk about mental illness. We have to talk about what no one wants to talk about.

I remember the man in his forties who used to walk around the library where I worked, punching at the air, having heated arguments with no one. We snickered; he was spoken to and sent outside, where he would wander the park behind the library, continuing his conversations with the air. I often wondered his story. Yet my first inclination was to giggle.

I remember the woman I once worked with who talked about living in a nearby town when they closed the psychiatric hospital. They had nowhere to go, she said. They were considered relatively harmless, so they were turned out into the streets to roam the town.

I remember the story I wrote as a young intern, on behavioral health services at the hospital that employed me, about the inpatient hospitalization program for children. My eyes were opened to things I'd never heard of. Yet not many years later most of those programs were drastically cut, and the only psychiatric hospital for young people in the area closed its doors, leaving the nearest comprehensive mental health services for children in a neighboring state.

We will probably never know why Sandy Hook truly happened, other than the fact that we live in a fallen world. That doesn't mean that we don't search for answers and search to make things better, to make our world more safe, particularly for children. But in the rush to fix something terribly broken, we cannot rush to judgment; we cannot look for the easiest answers; we cannot address the symptoms without taking a long, hard look at the root causes.

Otherwise we are the ones punching valiantly at the air, grasping for answers, desperate for blame, trying to patch together a broken system with tape and glue when perhaps we need to start from scratch; to reconstruct.

Saturday, December 15, 2012

Lost; Found

"Twenty-seven?" I could barely choke the words out in response to what Dan had just told me. "They're saying TWENTY-SEVEN?" I stood with a mop in one hand, staring at the television, seeing but not comprehending.

I'd heard about the school shooting about an hour before, just before dropping off Ethan at school. I'd come home and started furiously scrubbing the bathroom while putting the TV on in the background. What a world we live in, that my heart would not completely stop just at the news of a school shooting. We hear these reports so often. Two people at a mall, someone takes down their boss at a workplace. But as I Windex-ed and swished our toilet bowl, the numbers were climbing. And worse, they were now talking about children. Many children.

Chores abandoned, I sank onto the couch, watching the local news teams report on the horror just an hour away, in a pretty little town I'd driven through a few times. Those reports morphed into national breaking news. Every update seemed worst than the last. I walked outside to throw something in our trash bin and was struck by that 9/11 feeling: the sky was too bright, the day so pleasant -- this couldn't be happening. This sunshine felt all wrong.

At three I needed to go pick up the kids at school. Eighteen to twenty kids, gone, kept rolling over and over in my head. My mind didn't want to imagine the number. My mind didn't want to try to see faces, and yet as I pulled into Anna's school, seeing children of course made it all real.

"I got Student of the Week!" Anna announced cheerily as she got into the car. I wanted to hug her but had to keep driving to keep the pick-up line moving. After congratulations and chatter about her day, I knew I wanted to tell her before she heard elsewhere. I kept the news basic with few details. Anna took it in with her usual stoicism when learning of tragic events. We moved on to Ethan's school.

Ethan's school. Pre-K through second graders. Hundreds of them who always come pouring out of the doors as I walk to get Ethan from the furthest front entrance. Don't cry now, I willed myself, watching them bop happily to their buses, some with backpacks half the size of their little bodies.

Inside the school there was the usual cheerful dismissal chaos. Mrs. M., the special ed teacher was there, watching the kids walk by. "I know you'll hug them all a little tighter tonight," she said, her voice breaking. Her eyes filled.

Outside again Ethan did his usual 20 minutes of wrestling with two friends over on the side of the school, under the trees. Ethan and his friend B. are both 5 now and kindergarten age. Most likely the same age as many of those lost. I tried to think of what it would be like for him not to come home, but my mind wouldn't let me. I was glad of that. I thought of our struggles and fears and disappointments and the roller coaster of the last few years and was reminded once again that a diagnosis is not the end of the world. I have my son.

At home we had to get ready for Anna's Christmas show that night. She'd been talking about it for weeks; so excited about having a solo and about it being "really good this year, mamma." I wanted to celebrate with her, yet something about it seemed surreal.

Just before we headed out the door, I talked to the mom of one of Anna's friends over Facebook. She was in shock. She'd just learned one of the children who died was the sister of one of her daughter's classmates back in preschool. Anna's preschool. She asked me if I remembered? Back when Anna was 4, I'd pick up Anna with Ethan in tow, and she'd pick up her daughter with her other little daughter along, and this mom would be there with her little girl, getting big brother. I looked back in my mind and could just remember.

That little one was gone now.

We pulled up to the school and I looked over at the preschool entrance where I used to get Anna. How could that have been four years ago now? Life was a wisp.

We gathered in the gym, parents and grandparents and squawking babies and chatty siblings. This being a Christian school, the principal started everyone out with a prayer for those in Newtown. I was glad we did. It didn't seem right not to.

And then, the kids. They were great. They were perfectly imperfect as they wobbled sweet solos and craned their necks to reach the microphone. The whole theme was that they were having a party, celebrating the savior's birth.

How do we party, at times like these? How can we be celebratory? I couldn't help but think, even as I sang and clapped along. Then the kids started singing Away in a Manger. Like most Christmas carols, I knew the first verse well but not the others.

For whatever reason, for some Reason, the kids sang the third verse at least three or four times. The words rang in my head and pierced my heart.

Be near me, Lord Jesus, I ask Thee to stay
Close by me forever, and love me, I pray;
Bless all the dear children in Thy tender care,
And fit us for Heaven to live with Thee there.

And in that moment, I could see them. I could see for a moment that those children no longer knew pain, or hurt, or sadness. We were the ones left behind with the wreckage. They were free. They were lost, but found.

And yes, this was the other part of the story, of Christmas for those who believe in the Jesus of Christmas.

We sing of Emmanuel, which means God with us. Christmas is of God coming to us, becoming like us, and partaking in our human sufferings, and giving us a hope beyond this broken world full of sin and suffering.

Even in our times of pain, when we don't feel like outwardly rejoicing, we can carry that in our hearts. We can express God's love to ease others' heartache.

The kids sang their last number and we clapped and cheered. Back home there was eggnog with the grandparents and the kids tucked in late in their snug footie pajamas. Late at night I still awoke, thinking about 20 children, thinking of parents unable to sleep, locked in a nightmare.

I don't have all the answers. None of us ever will. I am not the perfect Christian full of super-faith. I am a Doubting Thomas. I am the man who cried, "I believe -- help me with my unbelief!" But today, I cling to Hope, and I cling to Truth.

I hope you will, too.

Sunday, December 9, 2012

Another Friday Afternoon at the Library

So there we were, another Friday afternoon at the library. We have seem to have lots of adventures at the library.

I'd told Ethan he couldn't smash the Legos, Angry Birds-style.

I'd encouraged him to play with trains, read books, do puzzles, or climb around the log tunnel.

Just stand back and watch this time, I told myself. Don't be so eager to intervene and nag.

Four little girls happened to be there, all about his age. From the start, I could see Ethan wanted to play with them. They goofed off around the log for a few minutes, and then one girl suggested doing a puppet show.

Uh-oh, here goes. How long until his puppet starts annihilating the others?

Three girls sat to watch. Ethan and another girl grabbed puppets. She made an announcement about the "movie" starting and everyone needing to be quiet and listen. Ethan took his rabbit and looked out at the "crowd."

"Hi guys?" Rabbit asked. "What's your name?" Everyone gave their names.

"How old are you?" One five and three fours. "I am five so I am older than you," Ethan said to the fours, jumping out of character.

"Do you like fruit?" Rabbit asked. I grinned at his clever use of scripting. No one else knew this was straight from the song "I Like Fruit" we'd heard on the XM radio kid's station several hours earlier.

The food questions kept coming. "Raise your hand if you like vegetables?"

"Who likes pizza?"

"Who likes macaroni and cheese?"

Time to change gears, kiddo. Don't exhaust the topic.

The other girl intervened, introducing the fireman puppet, who wanted to educate them on fire safety.

Ethan, jumping right into his oft-played Annoying Little Brother mode, grabbed a panda bear puppet and made it start dancing around. "I am Mr. Polar Bear, Polar Bear, Polar Bear..."

"It's a Panda Bear," I tried to helpfully hiss to him.

"I am Mr. Polar Bear, Polar Bear, Polar Bear," he continued singing.

"Hey, I'm trying to talk!" protested his friend with the fireman puppet.

Danger, Will Robinson...No, don't intervene! My two inner voices argued.

Ethan found a crocodile puppet and announced, "I will eat you all." Thoughts of fire safety disappeared. They all squealed, scared and excited at the same time. Mr. Crocodile made his way out of the puppet theater and into the audience. The girls jumped up and started running.

This was good, this was really good. It just wasn't good at the library.

When the frolicking group came back toward me, I tried the usual admonishments about indoor voices and no running in the library and that this wasn't the playground. Ethan toned it down by about 3 percent and then took off again.

They all came running back, flushed with excitement, hair mussed and breath panting, and I threatened to take Mr. Crocodile away, which halfway broke my heart, because here he was running and playing and actually wanting to be with other kids, but why did it have to be in the middle of the library? I could feel the looks from other people boring into me. This has to stop, I thought as they came around a third time.

But before I could shut it all down and be the bad guy, enter Miss Debbie, the children's librarian.

I love Miss Debbie. She runs story time on Tuesdays. She plans lots of other creative events for the kids both during the day and in the evenings. She's very animated. She's very friendly. She knows about Ethan and always goes out of her way to reach out to him with small gestures.

"How about we have a little story time?" Miss Debbie announced. "Kids, go find some books you'd like to read."

The four girls stopped what they were doing and went to find picture books. Ethan looked on, chagrined that the game had stopped. He slumped against the puppet theater in defeat. Five minutes later, the girls had four books and three cushions and were ready to read. Miss Debbie pulled up a chair and started. Ethan lay on the floor in protest...and then sat up...and then inched his way over until he too was sitting with the girls.

I stood there and watched as Miss Debbie spent the last half-hour before the library closed, reading and chatting with the kids. They sang songs complete with hand gestures. Miss Debbie gave Ethan a chance to turn pages or answer questions. I found a magazine and remembered what it was like to go to the library and not stress about what my child was doing.

When we were about to leave, I walked up to her.

"Thanks," I said. "I'm sorry about the way he was behaving. A year ago he wouldn't have wanted anything to do with those kids. I knew they couldn't run around like that, though."

For a quick moment something almost welled up in her eyes. "No," she answered. "You don't have to thank me."

Only I did. So I am.

Thanks Miss Debbie, for going above and beyond your job description to help ensure our afternoon didn't end in disaster, and that my boy felt like part of a group, and that I could just sit for a few minutes and flip through a magazine.

The little things do matter. And the little things are rarely so little, after all.

Tuesday, December 4, 2012

Perfectly Okay

My nephews were over the other day. They are three and four years old, and every time they come over, I marvel. I marvel at the way they toddle over to our playroom, dig through toys, and play. I marvel at the mess and at how seemingly unrelated objects are pulled out and played with together. I marvel at them playing on the floor for long stretches of minutes, coming up with ideas without being coerced, playing without thinking about playing.

Why? How? How does it come so easily to them and not to my son? I have often wondered. I think of the hours upon hours we've spent on the rug. I think of the books and binders of information and websites complete with video examples of games that might be enticing for kids on the spectrum.

Play around here can seem more like a college level course than just banging around with some cars and blocks.

Play means something different to Ethan than it might to a typical kid. (Then again, maybe not.) For Ethan, play means computer games, watching DVDs, or really anything with buttons. If he can push it and see what happens, he's happy. He also adores any board game. If the game has clear-cut rules and a clear beginning and end point, he's all for it.

More recently, he's added some creative elements to his play, Ethan-style. What does Ethan style look like? Pounding on the toy cash register with both hands and watching the numbers add up "to see which hand gets the most points." Or playing freeze dance with his CD player, the way they do in gym class. Or shooting his Angry Birds car slingshot and trying to knock various items down.

I've thought a lot about why good old fashioned imaginative play seems like a lot of work around here, and I don't mean for Ethan. I know why it's work for Ethan. It's work for Ethan because he's not a typical kid. But why is it work for me? Why can't play time just be play time without seeming like a therapy session? Why do I stress when Ethan is getting more than the allotted screen time approved by the experts?

I'd love to tell you it's because I care so much about my son and want the best for him, and know how critically important play is to development, but I'd be holding out a little.

It's time for full-disclosure here.

We parents can say we don't care about assessments and numbers, that we're not obsessing over our child having or losing a diagnosis, but in my case, that would not be totally true. If I'm completely honest, I know:

Ethan's lack of play skills are a big part of why he is on the autism spectrum. And yes, there is a part of me that has spent a lot of time (subconsciously) thinking if he could just improve on those, that 32.5 on the CARS (Child Autism Rating Scale) would dip down to a 29.

And what would that mean?

In reality, it would mean just about absolutely nothing. It would mean Ethan was "really close to autistic" rather than "just a little autistic." Who knows where those lines should really be drawn, anyway? But when you're a parent, and you feel overwhelmed about your child's needs, you get into habits. You tell yourself you won't fixate on things but a part of you does, because a part of you says labels don't matter while another quieter part still wishes your child would lose his.

I want to be done fixating.

On Sunday, while my nephews played unabashedly and without effort for a half hour, Ethan snuggled on the couch with my dad, watching the Patriots game. Every week he learns a little more about football. My dad, when he's visiting, relishes being able to teach him. I watched the way he cuddled up to his grandpa and asked about touchdowns and thought of how my brother Andy has never done such a thing, how we could not imagine Andy ever doing such a thing, as much as we wish he would.

"It's really okay," my mom said, as we watched the cousins play. "He doesn't have to play the 'right' way. He'll make his own way."

She'd said it before, and I'd agreed with her before. But this time I really felt it.

He learns in his own way, I told her. We're always amazed to see the way his brain takes different paths to reach the same destinations as other people. He's wired differently, but it's okay. He gets by. He makes a way.

My Floortime books encourage me to constantly be on the floor (literally) with Ethan, urging him toward the next developmental stage, warning to build strong foundations or critical pieces to my child's development will be missing.

That's all well and great, but sometimes I just want to relax with my son. And I want to marvel at the fact that in his own unique way, he is fearfully and wonderfully made. And that it's not my job to morph him into something he's not. And that's okay.

That is perfectly okay.

Saturday, December 1, 2012


Growing up in a family of diehard Red Sox fans, we had a standing agreement: if the Red Sox ever actually did manage to win the World Series, we were going to Boston to dance in the streets and celebrate.

Fast-forward to 2004, and the unthinkable actually happened. The Red Sox won. Only, when it came time for the party, I quickly realized no one else was really keen on keeping their word. I, meanwhile, was ready. So, after extending several invitations to family and friends and getting no takers, I headed out alone in the dim early morning light to Boston that late October morning to party with a million other people.

The crowds were thick but jubilant. The people-watching was superb. I was having a blast -- until the parade of Red Sox players actually came rumbling near. This is it, this is the moment we've been waiting for forever, I kept thinking, juggling my ancient video camera and my regular camera. I kept trying to switch from video to still pictures and back again. The results weren't too pretty, in the end. Some of the pictures are blurry and the video is shaky enough to make you nauseous.

Even as I was doing all of my clicking and filming, I was thinking, I need to just stop. I'm so busy trying to capture the moment, I'm missing the moment.

Lately, I've realized how much I'm always running. I can't help but think there's a lot of people out there who feel the same way.

Ethan's few hours in preschool are rarely a break for me -- they are a time to make a mad dash to write freelance articles, pay bills, run outside and rake a few bags of leaves, make phone calls, fold laundry.

Some of this is just life, I know. But I can't help but think something is "off" when there's never a moment I can just sink into the couch and not think about a million things.

Something is out of balance when I'm awake in the middle of the night thinking of calls I forgot to make or emails I forgot to write.

Something's not right if I can't lay down my broom and just play and tickle and laugh with the kids for awhile.

The holidays are upon us and we all know that ramps up the busy-ness factor by about a thousand. And those of us who feel we need to "do it all" somehow find a way to do a lot more. Sometimes the "doing" has the best of intentions -- like creating new family traditions; trying to reach out to those in need; even making sure we hold on to the true meaning of the Christmas season.

But at some point, at least for me, there has to be less doing and more being. Being in the moment. Being still. Rather than being all things to all people.

As much as I love to write, I've learned that sometimes this blog becomes not just me writing about a snapshot from our lives but rather constantly looking for blogable (is that a word?) moments. And when I'm so busy looking for the message of a moment and how I'd write about it, I'm still not learning...

to be still.

to rest.

And so, I think I may be writing a little less and taking care of myself more. I think it's the kind of gift we could all use this Christmas.

 "Be still and know that I am God." -- Psalm 46:10