Sunday, December 30, 2012

Comfort

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

Knee-Jerk

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

Still

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



Tuesday, November 27, 2012

Five

I think the best moment was the look in his eyes.

We were sitting in the living room, waiting for people to arrive to celebrate Ethan turning five, and there was no mistaking the anticipation as he peered out the window and bounced around on the couch.

When he turned one, Ethan seemed completely unaware what was happening at his birthday.

When he turned two, he didn't want to open presents.

Three was a little better, and four was the first time he seemed really excited to open gifts.

Five was the first birthday he was excited about people.

And so although many people couldn't come due to the holiday, and although Ethan doesn't yet ask for toys and has to be encouraged to play with his new presents rather than go back to his old computer standbys, and although the card that played the song was probably his favorite gift, and although I look at the little friends he was able to invite (at least one could come!) and wonder down the road as the boys grow and mature if the so-called "typical ones" will still want to be friends with my quirky little guy, if they'll still be there celebrating...

In that moment, we couldn't have asked for anything more.

On Wednesday, Ethan will officially turn five. While his five may look different than some boys his age, I hope and pray we will always keep our eyes on his path. I pray he will always feel loved and accepted by his family, and that he would know how proud we are -- not of how his milestones or interests stack up against others his age -- but of him.

Happy Birthday, my boy.






Wednesday, November 21, 2012

Balloons


Anna had the idea first, I think at her 7th birthday party.

Instead of hoarding all the pink and purple helium-filled balloons, instead of keeping them inside until they drooped and withered, or instead even of handing them out to people to take home, she wanted to gather everyone and simultaneously let them go, up to the sky and out of sight.

It's funny...as a child, I would have been traumatized. I was the kid always crying over the balloon that got away. I remember losing a balloon at a Memorial Day parade and still whimpering over it in bed that night. I kept seeing the balloon in my head, small and red, drifting away, cold and lonely somewhere. It just about broke my heart.

But Anna had different ideas. And so we gathered in a circle and counted down and of course someone let theirs go early and someone's almost got stuck in a tree, but we let them go.

This year, she wanted to let them go again. And in October, when we were celebrating my mom's and brother's birthday, they too decided we should go out into the yard and have a balloon liftoff ceremony. Now Ethan is asking me if we can let balloons go at his birthday.

I was thinking about this the other day, picturing the myriad colors wafting into the sky as we all squinted to see until they had truly disappeared.

The balloons looked pretty enough scattered about the house and in the yard, for the few hours before they began to sag and droop. But when we opened our little and big hands and watched them all get caught by the wind...now that was something spectacular. That was what had everyone talking. That's what had everyone looking skyward with wonder.

I can't help but ask what happens when we live our lives with this same open-fisted posture.

We can hold on tight and try to order our little worlds and think we have all of the answers to how it MUST go.

But sometimes, letting go is ironically what brings us the most freedom.

Those balloons never soared until someone let go of them.

And better yet, Anna helped remind me that sometimes, actually, letting go can be downright fun.

As Beth Moore has said, talking about the tragedy of living a boring life, hands knuckle-gripped to the steering wheel you've wrestled away from God: "It's not a wild ride if you're the one driving."




Saturday, November 17, 2012

A Letter

Dear Other Parents in the Windsor Public Library yesterday,

I know how I probably came across. I came off like some sort of tired out, worn down mom who was constantly nagging her son and who didn't seem consistent in her discipline. And you know what? You'd be right.

To the gramma watching her granddaughter play with puppets at the "puppet theater"...thanks for being kind enough to offer for Ethan to play along with her when you saw he really wanted to do a puppet show, too. I wanted to reject the offer but you were too kind. I wanted to reject the offer because I knew what it would turn into -- Ethan's shark puppet wanting to bite and attack your granddaughter's ballerina and firefighter. I knew this because that is the one puppet show game Ethan wants to play right now. We get in an ongoing battle about the show NOT being about abusing the puppets or even the people watching, but so far that message has not sunk in. I wanted to explain things but didn't have the energy to explain things, like that my son is just starting to want to play with puppets in general and has trouble generating ideas. He couldn't just jump into your granddaughter's play scenario, so he decided to go into attack mode again. He's not just a brat, I swear. Although yesterday he was acting pretty darned bratty.

To the people around the Lego table: I'm sorry about the noise. I have told Ethan time and again he cannot play Angry Birds with the Legos, although this is his favorite game. In case you hadn't figured out, Angry Birds means making sound effects from the game and then bringing his hands over to the huge piles of Legos strewn all over the table and then smashing them. I always encourage Ethan at the Lego table because sometimes lately he has started to build and play. But the darned Legos don't stick very well to the old worn down table, and for someone who is trying to build up his hand strength and fine motor skills, it's very frustrating for him. Hence, we get Angry Birds.

And to the mom who probably didn't appreciate my son getting other kids to roll around the dirty floor, I'm sorry. Here's what you have to know: two years ago, even a year or less ago, my son didn't want to engage any other kids at the library. He wanted to run around the book stacks, try to flip the light switches, and check out the vents in the floor. Most parents would stop their kids fairly quickly if they decided to roll across the library floor, and I did try. Only, he was rolling TO other kids. He wanted to go to them and wanted them to watch him. He wanted to play with them in the log tunnel but didn't know quite how, so he was loud and slightly annoying, yelling, "I see you!" while peeking in the log over and over. And then he actually got the other kids to roll with him, and they were laughing together, and I couldn't help but be simultaneously frustrated but also proud that he was reaching out.

I know I might not have looked like I knew what I was doing. And sometimes I don't. Sometimes things that would seem unacceptable I bypass for the greater meaning in the moment. Other times I know I can't let it go on because it would set a precedent. Finding that fine line is hard at times. Especially when my son hadn't listened to me for most of the afternoon, and the usual consequences weren't getting either of us anywhere.

So please know: Just as you are hopefully trying to be the best parent you can be, I am trying. My son is trying. Sometimes "trying" looks obnoxious. Sometimes he really is being obnoxious. If I have the time, maybe sometime I'll share a little bit of my son's background. But I can't have the conversation with every parent I see. So please, try to extend grace. And I will try to do the same.

Wednesday, November 14, 2012

Lights in Dark Spaces

Dan was sitting at the dining room table with the kids, teaching them about electricity. Several years ago I'd bought this toy with circuits and light bulbs and all kind of sounds, where kids can make the connections, with an adult's help, and watch what happens.

This is not my thing at all. I am so not technically oriented, so I busied myself cleaning the kitchen, my ear tuned to the other room.

"See? You can't see electricity," Dan was saying. "But you can watch what happens. You can see what it does."

I thought of tucking Ethan into bed awhile back, saying prayers. But I can't SEE God, he was saying. He sounded indignant. I didn't have a good answer. Who says parents ever have all of the answers? I looked out at a tree and watched it sway with the breeze. God is like the wind, I said. You can't see it, but see the way it moves things?

This month is Thanksgiving, and everyone's talking about gratitude. I've got about 12 Facebook friends all counting day by day, what they are thankful for. I love it. I'd much rather read that than people's political rants. I read and feel uplifted. And I remember...

November makes me think. November is Ethan's birthday, and November marked both when he started early intervention services and started school for the first time. Every time I think of both those milestones, I know.

I know that I'm not alone.

I know that God is at work even when my eyes are too blurred with tears to see and my heart is pounding too hard to hear.

Three years ago, just when I felt completely overwhelmed and discouraged, with a binder full of photocopied hand-outs on what I might possibly do to help my son's autism, just when I felt as if I had no idea how to move on or how to have hope, the most upbeat and inventive therapist arrived at our front door. She was Ethan's cheerleader; she was the question-answerer and idea-generator; she was someone to talk to when there weren't too many people to talk to, for an entire year.

And just when we were preparing to say our tearful goodbyes and move into a new phase, two years ago I was introduced to the special education teacher and speech pathologist at Ethan's school. And while it was hard to get used to sending my son somewhere and not having a therapist in my home to bounce ideas off of, they have always been there for me, and more importantly, for Ethan.

They make themselves available to meet, whenever I need to meet, even when they know sometimes it's just me needing to talk and make a connection; to ask questions; to seek clarification. They schedule the extra time for me at parent-teacher conferences because they know I need it.
They just started a social skills group for Ethan and two boys, two days a week, 20 minutes before his school day starts, in addition to his regular speech, because they know that's what these kids need.

I have had my qualms with school, and back in the day I had my qualms with some of Ethan's early therapies, but I can never deny: there have always been people placed in my path to help just when I needed it most.

So many, many people, when I stop and really look. They would make up a hundred other stories, if I chose to recount every one of them here.

Looking back, looking ahead, I can see them...those lights in dark tunnels, leading the way through; shining the path toward the next leap of faith, the next great adventure.











Monday, November 12, 2012

Playgroup Epiphany

The room was crowded, at our Monday playgroup in the school just down the street. Apparently everyone needed to get out of the house. The final tally was 18 kids, when usually 10 or 12 show up.

Being packed into a rather small room with that many kids makes Ethan a little tense (who am I kidding -- it makes ME tense!). I noticed he was a little less flexible; a little more grabby with toys. Sometimes there's such a fine line: Is he just being a kid? Is he just being a brat? Is his behavior something more, affected by issues beyond his control? Or a combination of the three?

When he walked up to a toddler playing catch with his mom, grabbed the ball, and trotted off, I knew I had to put my foot down. The mom, who I didn't know, gave me the classic look that says You Need to Control Your Child. I did, of course, but thought maybe now would be the opportunity to speak up.

"My son gets overprotective with his favorite toys sometime," I said. "He has mild autism and I think all of the people here today are stressing him out a bit." Before I had time to think of how much my words sounded like a cop-out and an excuse, another woman I'd never seen before whipped around in her chair.

"He has autism? So does my grandson," she said, with eager eyes. Apparently her "autism radar" had been up. I've done the same thing. I could empathize with the desperation in her eyes...that eager desire to make a connection. Her granddaughter sat coloring at the table beside her.

I gave her a two-sentence description of Ethan's background. Turns out, her grandson attends Ethan's school (but is in one of the elementary grades).

"Have you tried any of the special diets?" she asked intensely.

No, I told her, we hadn't gone that route.

"Does he go to a special autism doctor?"

Yes, I told her, he visits the developmental pediatrician every year.

"What about school? Does he have supports at school?"

I talked about pre-K, and his therapies, and social skills group, and who knew exactly what for next year in kindergarten.

"Are you working on things with him, like eye contact, stuff like that?"

I told her we were, that were weren't obsessive over it, not forcing it, but encouraged it as a way to relate to others.

As we talked, I grew more and more uncomfortable. I couldn't figure out why at first. Then I kept listening.

She told me her grandson was reading -- but was a whole year behind.

She told me how picky he was and how she was going to have bring him a Happy Meal at school and how someone at school got in trouble for heating up his meals and that wasn't right because he won't eat his food any other way.

She told me there was no way she could attend the support group I'd mentioned because that was his "down time" and he needed to unwind.

She told me that she'd told her grandson's parents different things they should do but they never did them and so she ends up doing them herself.

As I talked, I could sense her frustration. I also wondered: did she see her grandson as primarily a child, or a problem?

I heard myself talking, with Ethan right there, and for the first time I wondered: What if he was truly listening and truly understood? Were my words resonating with love? Or was I presenting him as a clinical situation, a diagnosis?

"He's got pretty good eye contact right now," she said after Ethan asked me a question, and I nodded. Another parent there who used to be an ABA therapist jumped in, talking about the way they used to give the kids food treats for looking them in the eye. For the first time I wondered, What is my son thinking? Did he hear her? What does he think of this?

We shuffled through leaves towards home, later. I couldn't stop thinking.

My hunch was that this woman was so desperate to talk to someone, and in the limited amount of time had no choice but to rattle off each issue her grandson was going through. I'd done the same thing in similar situations.

But I couldn't shake the feeling that we'd been talking about issues rather than children.

I couldn't help but feel I had been treating my child like a specimen.

Ethan will learn more and understand more. We need to be ready. We need to choose our words carefully. Someday, perhaps not too far in the future, he will surely be listening.







Wednesday, November 7, 2012

Adoption

I saw her smile, as she rolled the stroller into the outpatient clinic last week. Ethan was off having a social skills group. She sat down beside me, this acquaintance from church who is a speech therapist -- and has a daughter with significant special needs. We hadn't seen each other for about six months. I leaned over to say hi to S., a beautiful child with big eyes that don't see very well. She tried to lift her head up, but tired and put it back down.

S.'s story is amazing. My friend had been in the process of adopting her as an infant from Africa, when she got the word en route -- S. had contracted meningitis and was clinging to life. If she lived, she would most likely have significant medical problems. They gave my friend the opportunity to pass; to turn around; to wait for a child without so many issues. She refused. She continued her trip as planned. Weeks later, she returned home with her daughter, returned to a different journey than she'd expected.

S. is the same age as Ethan.

I felt the guilt, pressing in, as we talked. I thought about the way my son can run and jump and play. He has laser vision and hearing. We can have a conversation. For a moment, I was glad he was in the social skills group, so she wouldn't have to see...so she wouldn't feel that mom-ache.

But -- I looked at my friend and knew she saw something different when she looked at S. She hadn't given birth to her but in every way had the eyes of a mother. Those eyes pierced past the surface. Love gave her a different kind of sight.

*****

We spent Saturday afternoon at the animal shelter.

We'd had to say goodbye to our cat after 10 years the month before, and there'd never been any question we'd open our home to another. The problem was, we couldn't agree.

Anna and I preferred the littlest kitties. There was something about them that made them so darned lovable. More than that, we'd gone in there on a mission not to get a feline with any "issues," like the respiratory virus Zeke had carried.

"Look for watery eyes!" I had warned everyone. "Avoid kitties with watery eyes!"

Two minutes after we walked in, we saw him: a black five-month-old kitten with white socks. He batted his paws on the glass, wanting to play. We walked past scores of other kittens, working to engage them, but kept returning to this one. He followed our every move. He pounced and curled up against the glass as if trying to get pet.

"He is positive for calici," the adoption counselor told us, as we got to know him in one of the playrooms. Darn. That explained why he was still hanging around, not tiny-cute anymore. Another respiratory virus. We'd seen it written on his cardboard carrier box and thought it was just a nickname, not a virus. They told us it probably wouldn't be a big deal. We could treat any flare-ups with antibiotics. We could probably get other cats in the future if we wanted to.

They told us that, but I didn't want a cat with issues. Neither did Anna. She started sobbing in the corner, asking for a girl kitty, asking for the cute kitties in the back. I gingerly stuck out a hand to pet this black, lanky fur-ball, not feeling love at first sight.

Then Ethan walked over and stretched out a hand. The kitty sprawled out on the table and purred. The room went silent. Ethan slowly, gently spread out his hand and pet the kitty. His face was spread into a grin. Kitty soaked it all in, drinking the affection.

Something stung in my eyes and in the back of my throat.

I thought of this kitty who'd happened to catch a virus -- labeled and quarantined; this kitten who loved to play but had no opportunity to play with any others.

I thought of my son and what it meant to reject someone because they weren't quite what you expected, because they didn't match up to some sort of ideal.

I thought of S. and her mother racing across the ocean to save her.

I thought of my bundle of imperfection and the way despite it all, I am loved by God in a way I don't necessarily deserve.

And I knew: we were bringing him home.
 
 "This resurrection life you received from God is not a timid, grave-tending life. It’s adventurously expectant, greeting God with a childlike “What’s next, Papa?” God’s Spirit touches our spirits and confirms who we really are. We know who he is, and we know who we are: Father and children." - Romans 8:15-16, The Message


[A postscript: All it took was an hour, and Anna too was enamored; completely in love. We named him Levi.]









Sunday, November 4, 2012

The Boy Next Door

Last summer, we noticed.

Next door playthings began appearing in the backyard. Our neighbors have a middle-school aged son, so we weren't sure what was up. We know our neighbors on that side but don't talk that often -- usually just wave hello and jaunt over there on Easter for a big egg hunt they do with most of their relatives.

We saw a new play house. Then some other outdoor doors appropriate for a toddler or preschooler. Finally one day we spotted a little blonde boy out there playing. I figured maybe a relative or close friend had come to stay with them for awhile. Then one afternoon when we were both outside, our neighbors introduced us to A. -- their new son, who they'd adopted from Russia.

A. is almost a year younger than Ethan, has bright blonde hair, the kind that's almost white, and a huge grin. At first he spoke mostly Russian, but you could tell he longed to make friends with almost anyone.

"Hi!" he'd call out to us sometimes, as we walked to get into our car.

I started to think of the possibilities. How about that? A possible playmate for Ethan. To say we don't exactly live in a quiet cul-de-sac neighborhood with scores of families with young kids would be an understatement. We live on a busy street full of older homes and older people. A few families with young kids have moved nearby in recent years, and the kids have been blessed to get to play with the neighbors' great-grandkids, who live down the street, but overall, this is not a neighborhood chock full of kids.

So here was this ready-made playmate for Ethan suddenly appearing next door -- only Ethan didn't want anything to do with him.

If A. was out in the backyard, Ethan didn't notice or didn't care.

If A. called hello, I'd prompt Ethan to call hello back.

When A. started attending the same playgroup down the street with his grandmother that we attend on Monday mornings, I thought maybe we could get to know him better. A. would dutifully say hello to Ethan, who would maybe say hi and then trot off to play with other things.

Even worse, a few times A. annoyed Ethan by sitting in the spot he wanted on the rug, or getting his snack served first at the table, and then to my mortification Ethan would announce, "No! I don't want to sit next to him! I don't like him!"

Sigh.

We didn't see A. for most of the summer (I think the family goes away to Maine). The first day the playgroup started up again in September, Ethan asked if A. would be there.

Well, he's showing interest, this is new, I thought. Yet when we'd actually get to the playgroup, Ethan wanted nothing to do with him.

This went on for about six weeks. Ethan would talk about A., look to see if A. was walking to playgroup at the same time...and then promptly ignore him once we got there.

Last week I was out in the backyard catching up with my other neighbor, who'd been in Ireland for over a month and had returned not long ago. Anna was on the swing set. I turned around in mid-conversation to look for Ethan...and found him in the yard next door.

Ethan, A., and A.'s grandmother were playing tee ball. Ethan and A. were tossing the ball back and forth, running after the ball, chasing each other, laughing.

When I came over 15 minutes later they were still playing. Ethan didn't want to leave.

The next day when the kids went out to play, Ethan saw A. next door and promptly headed over there. We now have a problem we have rarely, if ever had -- how to stop our child from being too social. When I told him it was dinner time, he wailed, "But I like playing with him!"

Fourteen months later, Ethan discovered the little boy next door.

Progress around here, as it relates to the social side of things, moves at a tortoise pace. That makes it no less sweeter. Perhaps that makes it even more sweet.














Thursday, November 1, 2012

The Dark and the Light

I'll be honest.

I was going to write whine about Ethan's IEP meeting. I was going to write about yes, the good reports and news on his progress but also my frustrations with the principal, with assumptions made and key staff members being absent, about people insisting they know what is right for my son 10 months from now and wanting to force decisions.

I was going to, but I can't.

I can't watch neighborhoods go up in flames on television, watch houses wash away and the tiniest of newborns be evacuated from a flooded hospital and then gush about injustice here. Not today, when I'm grateful the lights are back on. I wish I could I take on this attitude each and every day, but it's amazing the way human nature creeps in on all of us and life sinks back to ordinary and full of things to complain about once again.

Our storm story is so mundane, here in CT far from the coast and farther from the more devastated areas in New York and New Jersey.

Monday the kids woke up to no school and gray skies. Our flashlights, candles and radio sat waiting on the dining room table. We weren't going to be caught unprepared this time around. Like countless other parents, I tried to think of how to keep the kids occupied. We decided on a tournament of board games: Candy Land, Chutes & Ladder, Go Fish, and so on. This would have worked swimmingly, except for the fact that somehow, I kept winning (I'm one of those types that can't bring myself to cheat and "let" the kids win). This resulted in much weeping and gnashing of teeth from both kiddos...but it did take about three hours. By the end, we were going to play Hi-Ho Cheerio all night if we had to in order for Ethan to win one stinking game (those darned birds and dogs!).

By the afternoon, the wind was picking up and the sleeping bags in the living room were spread out on the floor. Before the wind got too bad, the kids wanted a chance to do this:



For awhile we just lay on sleeping bags, reading books and watching the wind whip the trees.

video


I would've loved to stay there forever, cuddling, resting, watching. Some day they won't be so little. Some day they won't want to snuggle.



By the time darkness fell I thought we'd missed the worst of the storm. I could hear the wind howling, but apparently Hurricane Sandy had already made landfall. Typical storms usually begin to fall apart at that point...which is why I was surprised when, two hours later, the wind was still roaring and the lights went out.

There we were, exactly one year later, experiencing another freak storm, sitting without power. Was this possible? The sense of deja vu was incredible. There was the lantern and Anna whimpering, afraid of the dark. Branches were whapping around, some hitting the house and roof. The next morning there was the radio and the candles and eating Pop Tarts and driving to get some Dunkin' Donuts coffee. Combine that with checking the power company outage map and getting excited to see power trucks on our street, and I felt as if we'd all be sucked into some kind of time warp.

But here's the thing -- sometimes a situation can look, feel, taste the same but not be the same. Every indication can be that the worst is going to happen, everything can appear as if history is repeating itself, but then something can happen that may delightfully surprise you.

When Ethan got his diagnosis, I could only think of it in relation to my brother. I heard a diagnosis of autism and saw my childhood repeating itself. Everything seemed to be going the very way I had lived it and feared it. To see past that and trust in a future unseen seemed near impossible. Yet here we are, three years later now. The only thing that's really the same is the words on the paper. We are taking a very different path.

Last night by 6 p.m. a man was outside of our window working on the pole. A half-hour later, our lights were back on. We spent less than a day in darkness. Our epic power outage repeat fears were unfounded.

It's hard to be too gleeful when there are many people out there still without lights or heat; many who have experienced loss. But I think I can't turn my back on the message meant for me, this time around. Life is a glorious, heartbreaking, breathtaking, gut-wrenching adventure. What it's not is predictable, or somehow controlled through fears or expectations (fearing the worst doesn't somehow make you immune from the worst...but quite likely may make you miserable).

As I lay in bed last night, content that things were back the way they should be in our little neighborhood, I couldn't help but feel suddenly immensely grateful we had gone through our seven days in the dark last year. I had hated it, but now as I lay there under the blankets appreciating the warmth of shelter and light and prayed for the families to our south, I knew. I knew that I wouldn't have felt it, as I prayed, if I hadn't lived it, or lived something a little bit like it.

And so I thanked God for the light, and I thanked God for the darkness.

Then I slept.


video

That night the full moon came out and the clouds were racing over it like crazy. Part of our street had power, and the rest did not. Light, and dark.





Friday, October 26, 2012

The Weather Watcher

I write about Ethan, and sometimes I write about my brother.

Now it's time to give my other brother a turn -- on his birthday, no less.

There is something you should know about our family: in addition to autism and spectrum-like traits, musical ability and affinity for good Italian food, there's something else that's been passed down for generations: a love of weather.

One of my first murky memories is of my dad calling home on his lunch hour so my mom could hold up the phone to the TV for him to hear Don Kent (a legendary Boston weatherman) share the latest on the impending Blizzard of '78. My dad and my mom's brothers were all huge weather nuts. They went out to Boston to meet some of the weather guys. A fun family gathering involved pouring over weather maps. My uncle had a mini weather observatory set up in the back of the house. That same uncle, incidentally, went on to obtain a PhD in meteorology.

Nate followed in their footsteps. Where there were storms, there was my dad, my uncles, my brothers. My dad fondly recalls chasing a hurricane out on the Cape as a young adult and the excitement of "water lapping under his motel room door." One uncle nearly had a tree fall on his car while driving through a tornado that hit my grandmother's town. Nate also narrowly missed a tree while chasing the Springfield tornado last year.

When the Weather Channel came to our home via cable in the mid-eighties, let's just say it was a very happy time at our house. For years I had the Local Forecast elevator tunes running through my head. 

My brother is four years younger than me. I can't say we're extremely close, I think because of the age difference and the obvious fact that, you know, he's not a sister. It's a different type of relationship, but I think we both know we love each other deeply.

One year back when I was in college and Nate was in high school I thought I had the perfect gift. No, it wasn't Christmas or his birthday; it was January and a snowstorm was about to pound our area. The Weather Channel happened to be broadcasting live from Blandford, a town about a half-hour away. Not only was it The Weather Channel, it was Jim Cantore, Nate's favorite weather guy, there doing live shots not far down the road. He kept mentioning people who had stopped by to say "hi."

"Nate! Get in the car! We're finding Jim Cantore!" I yelled. We squeezed into my Ford Escort and skidded onto the near-empty roads. Any sane (non weather-obsessed) person would not have been out there. I gripped the steering wheel with my entire being, willing the car not to slide off the road. We somehow made it to Blandford. We looked high and looked low for the familiar backdrop we had seen on TV. Jim Cantore had appeared to be at some sort of gas station. Blandford is not a very big town. Very quickly we realized he just was not there. I hated to give up. I hated to turn around. My eyes literally were filling with tears as we both had to admit defeat. Later, we realized (how could I have missed this?!) that Cantore was actually reporting from a rest area on the Mass Turnpike, which did technically run through Blanford briefly.

My brother is just as good as any local forecaster out there. He stays up late during storms to view the latest computer models and observe weather conditions. He can speak the weather lingo. He knows as much as someone who went to college for meteorology, only he didn't, because he didn't think he was strong enough in math.

Today he works for my dad's small business, but my brother dreams. Isn't there a piece of that in all of us? Often we make the responsible or practical choice. Often family or other duties are involved. That doesn't mean we aren't happy. But it also it doesn't mean that we aren't still dreaming.

My brother was blessed to find a wonderful wife, Christina. Even with three small kids, she encourages him -- find a way to go to school, study weather, it's your passion! The jury is still out on that one. But in the meantime, my sister-in-law got Nate the best gift ever: admission this weekend to a conference in the Boston area on Southern New England weather. Topics of discussion include 2011's Hurricane Irene, the Springfield tornado, and the October snowstorm. Weather experts from all over will be coming to talk weather: just as a monster, unprecedented storm barrels toward the East Coast.

I don't wish death, damage, or destruction on anyone. But I can't help but think of all of this and smile just a little. These people, these professed "weather geeks" don't want to see tragedy. They just really, really, enjoy a good storm. There isn't a better place I can think for my brother to be on Saturday, the day after his birthday.

Don't stop dreaming, Nate.




Sunday, October 21, 2012

What Jan Brady Didn't Teach Me

I have to admit: growing up, I was a major Brady Bunch fan.

Weekday afternoons on Channel 56, Boston. Every afternoon. For years. To say I have most episodes close to memorized wouldn't be too much of an exaggeration.

Any Brady Bunch affictionado knows the story of Jan and her lost locket. A "secret admirer" (later revealed to be Alice the Housekeeper, who empathized with Jan being the middle child) sends Jan a beautiful locket, which Jan proceeds to lose one evening.  To find it, the Brady's come up with a solution: replicate down to the minute everything that occurred that fateful evening the following night, to jog Jan's memory of exactly what happened. And so they all put on their jammies and eat the same bedtime snacks and make sure they brush their teeth in the same fashion (Bobby even going to bed with toothpaste in his mouth for some crazy reason) and voila! Jan starts screaming, remembering she leaned out the window to look at the stars. In typical Brady fashion, the locket is of course hanging outside of the window, stuck in the trellis vines.

I've tried the Brady Bunch technique with my own misplaced objects, and the funny thing is, it does actually work sometimes. But here's what doesn't: there is no way to perfectly replicate a situation that's already happened. I know this. We've been living it out in the church basement for the last month.

I've written about this being the first year Ethan is participating in our church's kids' choir for the Christmas show. They are practicing two songs, to be sung up on the stage under bright lights, for five performances (I'd be happy if Ethan did one). I'd be even more grateful if we made it through the show without him dabbling in his new-found nervous habit of digging his hands in his pants a la Al Bundy.

We wouldn't be doing this if it weren't for the fact that Ethan loves music and loves to sing. This is not something we would force him to do. But he seems to enjoy the experience in his own way, and doesn't mind practicing, so here we are.

The thing is, this is new for him. Ethan doesn't care for new. Most kids on the spectrum don't. Ask him to try something he's never attempted, eat something different, watch a show he doesn't know, his first response will be tepid at best, out-right refusal at worst. I've found that when he's decided to dabble into something new, one of the worst things is for there to be too much new, and for the new thing to be too challenging. So, for example, if he's going to try fishing in Maine for the first time, better to quickly hand him the pole all ready to go and make sure there's a fish right there to catch. Starting from scratch, attempting to explain too many steps, making him wait too long, changing the whole situation up every few minutes, is going to turn him off quickly.

SO, with this rehearsal thing, what I was hoping for is a hefty dose of sameness in the midst of Ethan trying something different. Alas, it was not to be.

Rehearsals started in the church basement with a CD. The first week went fine. This was what Ethan was expecting. He'd watched Anna in the past. He took it all in and I'm sure made mental notes that This Is What Practicing Is Like.

The second week, "Miss M." was on vacation so "Miss D." led the choir, and they only practiced one of the songs. Ethan didn't get why Miss M. was gone and why we only practiced one song, but he went along.

The third week, we were away in Maine. I hated to get out of the groove with practicing, but hey, visiting family comes first.

The fourth week, Ethan wanted to know why Miss M. was back. More than that, he wanted to know why a man was playing the guitar accompanying them rather than the kids singing along to a CD. The fact they had all been told several times that in the real show they would sing with a band not a CD had long since floated way over Ethan's head. The entire practice, Ethan couldn't take his eyes off the man and the guitar. He forgot all about singing. To top it off, anytime he did start to sing, this sweet girl behind him, who happens to have Down syndrome, started belting out the song in an ambitious but incredibly off-key way. I could tell this drove him crazy. He kept turning to stare at her, too. When Miss M. came around with the microphone to see how kids did singing on their own, he was completely oblivious that the mic was in front of him. This boy who knows just about all of the words by heart and can belt them out with gusto could only think about the girl out of tune and the man with the guitar.

This week, week five, we were prepared. We had a little talk about keeping our eyes on the teacher when practicing singing. Ethan assured us he would do that. So, we got downstairs and -- no, they couldn't have! -- they changed the room the kids were practicing in. AND Miss D. was back instead of Miss M., who had to care for an ailing relative. All of Ethan's promises about watching the teacher went out the window when he had to process a different room, different teacher, a door left wide open with parents hanging around outside, and icing on the cake, placement next to the girl out of tune once again.

I had to smile, watching him try to remember to watch the teacher or at least me, mouthing the words dramatically in the back, across from him. I had to offer silent thanks that while Ethan was distracted, he wasn't completely shutting down. He was coping as best he could.

I guess it's no surprise to anyone that life rarely flows like a Brady Bunch episode. Despite our best efforts, there isn't a way to truly replicate an experience, week after week or day after day. There will always be a changed room or sick teacher. There will always be something.

For those people with ASD who live for routine, predictability, and sameness, this is especially unfortunate. But I suppose the sooner they learn, the better -- and they won't learn learn unless we expose them, to the best of our ability and of course without cruelty, to situations that challenge them and take them out of their comfort zone.

Week six of practice is six days away. I can only imagine what surprise will be waiting for us this time around (Miss M. is back! We're switching back to the orginal room!). The only thing we're successfully replicating is unpredictability. Perhaps that's not such a bad thing.


Thursday, October 18, 2012

The Little Things

Awhile back after a string of depressingly rainy days inside with the kiddos, I'd had enough. I told them we were going on a "rain walk." They got out umbrellas and old clothes and away we went. We walked up by the school and splashed in puddles. We ran across the fields, mouths open, singing like we were in The Sound of Music. We got back home soggy, muddy, and a little chilled. The whole thing took less than a half hour, cost nothing, and the kids are still talking about it.

The other morning I looked out at our kind of busy street and really saw it for a second. I saw the brilliance of orange and yellow leaves...not just the construction sign indicating another day of the guys digging and blocking traffic. I saw the way the wind took the leaves for a moment and they did a brilliant dance before landing beneath the cars that always back up almost to our house during rush hour. I knew we needed to do something a little different, so after dropping off Anna at school, Ethan and I got on our sweatshirts.



"We're going on a fall walk!" I announced, heating up water in the tea kettle. Five minutes later, we had cups of cocoa and were sitting on the front steps before heading out. Ethan's lips turned chocolate-mustached. The wind was blowing. Whatever mild weather we'd had the day before was decidedly gone. Down the sidewalk, Ethan kept trying to walk backwards so he could see the stoplight turn from red to green. The guys were working again, blocking the streets with cones. The backhoe was beeping.

As we kicked at leaves I watched the battle play out in front of me...that fight to see the beauty vs. the mundane, the contrast between seeing and seeing.


I could look at the truck or I could look at the leaves turned a perfect hue of gold and red.

I could look at all that brings me down and awakens the blahs or I could breathe thanks for the littlest things.
Whenever I am stunned out of a negative stupor by something as simple as the feeling of a warm mug on chilled hands, I'm reminded again how important these simple joys really are. I am sobered by not only how much I may be missing when I'm having an off day...but how much I may be missing giving.


Maybe the library clerk needed someone to smile and ask how they were doing.

Maybe a friend needed just a few words of comfort on a rough day.


Maybe I needed to stop rushing and hold the door for someone who is convinced no one is polite anymore.

Maybe the obnoxious driver needed me to let them cut in front of me without incident, just because we all need mercy sometimes.






I will always, always remember this:

Back when I was in eighth grade, I had a pretty friend. I was not so much so, with my big perm and lack of make-up skills and overall nerdliness. I guess it was not so much that I was a bookworm (nothing wrong with that!) but also that I tended to be oversensitive and insecure, the type that cried easily and turned people off sometimes.

One night this friend and I were helping set up for an event to take place at our church the next day -- some sort of carnival our youth group was holding to raise money for something. I remember painting signs. I remember the woman helping us: Denise, an attractive, outgoing black woman who had a big smile and often volunteered for church events. She drove us home that night, and while nothing in particular had set me off that evening, I remember feeling as I always did. Slightly inadequate; goofy. My friend was going to go to modeling school. My friend chatted more easily with adults. Denise pulled up to the apartment complex where my friend and I both lived, and my friend climbed out first. Just as I was leaving, Denise leaned over for just a moment and said in a voice meant for only me to hear, these four little words: "You are so beautiful."

I tried to hide tears in the darkness as I walked up to my front door. At first I wondered what she had seen in me. Then I realized she must have seen something. And for years after that, as I stumbled through adolesence and mean kids at school and tears in the bathroom over cruel, heartless words by unthinking classmates, I always had those words to remember.

The little things do matter.

This is what I have to remember, on those days I only want to drown in me and all of my mental stuff.

And, all these years later:

Thank you, Denise.

Ethan found quite possibly the ugliest leaf on
our walk - but it was pretty to him.



Monday, October 15, 2012

Progress

We were at the MOPS meeting (Mothers of Preschoolers, for those unfamiliar) at church last week, and I'd agreed to help set up. That meant that Ethan had to go to childcare a bit early. When we reached the room (a familiar place -- he's just spent the last two years in there on Sundays before graduating up to an older Sunday school class) something about the situation made him tense up. Maybe it was the fact that almost no one was there or the teenage helpers were different. I'm not quite sure, but the next thing I knew, Ethan was heading over to the dollhouse. I knew why -- and I was right. He was heading over to the garage doors. He needed a stress reliever.

Here's the thing about Ethan. He doesn't have a lot of behavior issues. Often people will say, "Oh, I didn't notice anything was 'up' with him." The two areas he tends to distinguish himself as a bit different are with his challenges in coming up with play ideas and with his reactions to being in a new environment. Some kids run. Others tantrum. Ethan slyly heads towards plugs and cords (he calls them pluggers, which always makes me smile), outlets, computer switches, fans, and shades.

This both frustrates and fascinates me.

I should add a disclaimer here. The obession is not as bad as it once was. Back a few years ago when we attempted a quick getaway in a hotel, there was non-stop running from the lights to the toilet flusher to the blinds. We've learned that if we tell him he needs to be done now, in most cases he can force himself after a few minutes to stop. He also no longer makes a mad dash towards switches and buttons. He's more sneaky now. The one thing that's always gotten me, as I watch him crawl on the floor behind a chair to trace the path of a cord, or find a small light that he can unplug and bring to another room to plug in, is why? What is he thinking? What's driving him? What need is this behavior fulfilling?

When Ethan first joined the Sunday school room with the dollhouse and its garage doors, he was a little over two. He did not want to be there. We'd held him back with the under two kids a little longer to give him time, but he still wasn't ready. He didn't know what to do with this loud room full of unpredictable children. And so every week he would make a beeline over to the dollhouse, lie on the floor (or sometimes just sit) and push the garage doors. Up and down. Up, and down. The whole time, he'd be making the quiet humming of a garage door opening. If I tried to talk to him, he usually didn't want to talk. He just wanted to stare at those doors. If you'd been watching, you wouldn't have thought he was thinking much of anything. Over time, he's taught me to know better.

So there we were on Friday. The situation was different and Ethan was back to the doors. Only this time, for some reason I could see the gears turning in his head. I could see him actually look around the room and see some familiar reference points missing. He asked, "Why are not many kids here?" Then his eyes scanned the room. They settled on the garage door. As his favorite-therapist-in-the-world used to say, he "telegraphed" what he was going to do next. Instead of darting I could almost see him making the decision that he needed to go to them.

It reminds me of a night in the kitchen and deciding to have that extra piece of pizza, because I'm stressed about something and darn, and it just tastes good.

I walked over to him. I patted him on the back, leaned over, and whispered in his ear.

"Ethan, do you need the doors because you're stressed and a little scared about being here?"

"Yes," he told me, starting to push them up.

I looked around. One other boy was there, a buddy Ethan had just been munching on donuts with, who has his own little quirks. He was laying out a line of thin wooden blocks like Dominoes.

"Your friend is over there playing. Would you like to ask if he wants to play?"

Ethan looked at the doors for another second. Then he looked over at the other boy and the blocks, and stood up.

"Hey, would you like to play with me?" Of course not loud enough, and from across the room. I nudged him a little. We walked over. "Would you like to play?" he asked again.

"Look what I'm doing? Watch this Ethan!" his friend said, and knocked the blocks down. And with that, in that moment, the doors were left behind.

The goal here is not to stamp all of Ethan's habits out of him. Some he still very much needs. Some he still clings to for familiarity and comfort, like the nibbling on my nails that I still haven't beat. Yesterday I caught him at my parents' house, plug in hand. There were too many people. The house was too loud. He'd spent all weekend with people. It was just too much.

The goal is not to eradicate all that he is but to push him forward, bit by bit.

The goal, as it is with all of us, if we're really to live lives worth living, is to nudge him just a bit more out of his comfort zone; to encourage him to do things he may not have thought he was capable of doing.

To me, the best part of that moment at the church was not Ethan giving up a "stimming" activity to go play. It was that he could express to me or at least confirm what he was feeling. "Behaviors mean something," all of Ethan's really good therapists have said to me.

Being able to see that in real time...to see the way his mind works and understand that he had to work to make a decision part of him really didn't want to make...

That was progress.