Tuesday, February 26, 2013

Words on the Blackboard

My brother is 30 years old.

My brother cannot read. He cannot write without someone holding his hand. He, to my knowledge, never engaged in pretend play. He's never told anyone he loves them.

I love my brother with all of my heart. I pray that he continues to learn until the day he draws his last breath. I will never give up on him.

But there have been times when my brother's lack of ability has frightened me. And no more so than when Ethan was diagnosed with autism.

I've written of this before. Sitting in a small room, listening to two strangers confirm that, "Yes, we think your son has autism" when your son is just 22 months old is scary enough. Hearing those words and already having a picture of autism cemented in your mind is even more frightening.

When Ethan got his diagnosis, I couldn't help but wonder. At the time he spoke about 5-10 words regularly, and didn't combine them. I wondered: would he ever talk? Would we have conversations with him? Try as I might, I couldn't conjure a picture of him in my mind a year down the road, two years, five. I could only see where we were right then -- that, and see the only other autism I had ever known. And so even though the kind doctor who had given us Ethan's diagnosis said right then and there, knowing my history, "Ethan is not your brother," I just didn't know. None of us can ever know definitively how these things can play out. That is one reason today I still carry hope for Andy, when I think of him not speaking for years and years and then suddenly singing "Happy Birthday" in the car when he was maybe 10 years old.

Of course, over time Ethan has showed us he is Ethan. He is not Andy, he is not a savant, he is not "just a little quirky," he is not on the severe end of the spectrum, and he doesn't have Asperger's. He has decidedly mild classic autism. At least right now. He loves traffic lights. He loves board games. At times, he really loves people. He isn't obsessed over video games, but speaks of them and plays them often. He can be extremely affectionate. He is a whiz with numbers. He often prefers things over people. He is just one more person helping to make up the wildly varying composite picture of what autism is and what it looks like.

I'm amazed sometimes at how different, yet similar Anna and Ethan are. He adores numbers while math brings her to tears. They both have quirks and would rather be playing on the computer than at a party with people they don't know...yet both have their moments of pure joy with friends. Anna is intense while Ethan is more laid back. They both hate cleaning their rooms (okay, what kid doesn't?). They both love swimming up in Maine more than almost anything. Anna adores reading and learned to read by the time she was four, heading toward five. I was six and in first grade when I read my first sentence, back in the Dark Ages. And Ethan? Here he is now at 5 and 1/4 years and...oh my...he's learning to read.

Like many kids, I'm suspecting, Ethan learns in fits and starts. There are explosions of growth and more latent times. A year and a half ago, we got him a tracing toy that taught him his letters, and how to write them. He still struggles with writing some letters, but he's known upper and lowercase since then. Thanks to big sister having spelling tests and his affinity for memorization, he's picked up some words over time, and more importantly, has picked up the concept that letters make words. Lately when I've been reading to Anna I've caught Ethan leaning over my shoulder, trying to find words on the page he knows (mostly "no," "of," or "go").

The other day Anna and I were goofing off on the little chalkboard we've had kicking around forever, and she started writing simple words and sentences, things like, "Pat sat on a bat" or "a cat is on a bed."

"Ethan, I want you to read the sentence," Anna said in her best teacher voice. After some cajoling, Ethan came up to the board. He couldn't read Anna's sentence (among her many good qualities you will not find neatness) so I wrote one. And then, as I pointed to each word, I watched as, for the first time, my boy read all the words.

Every parent, any parent would see this as a milestone. Anna learned to read so fast we almost felt as if we didn't have time to enjoy, to savor it. She picked up reading so effortlessly, we blinked and she was reading paragraphs.

And here was Ethan, putting words together.

Sitting in that room at Connecticut Children's Medical Center more than three years ago, I just could not see it. There is no way I could fathom this boy, this one reading words on the blackboard.

We must remember this. I pray we can remember this. When things seem darkest...when our minds can't conjure something positive...when our thoughts and feelings tell us something completely contrary --

there is always hope.

Saturday, February 23, 2013

Uncharted Territory

Vacation week is more than halfway over, and we're finally getting out of the house and doing a "play date" at Chuck E Cheese. It's just tokens and blinking lights and ridiculous costumed characters, but things feel strange, in a good sort of way.

Anna is having two friends from school dropped off there so they can hang out for a couple of hours. The two girls arrive and I watch all three of their blonde heads bob off to do their own thing. I can blink and see them the day I first saw the three of them together -- the first day of three-year-old preschool, playing at the dollhouse. Now one of them is nine and the others will be soon. For the first time, I look and really see that the teenage years are calling, are breathing down all of our necks.

This is a strange feeling, letting Anna roam free to have these private adventures with friends.

Stranger still is setting up a play date for Ethan with two friends from school. One arrives about an hour before the first. Both boys are more social than Ethan, and I notice the way he has trouble staying focused on people rather than the games, on actually looking at the others and answering questions. Yet the fact that we're here is an accomplishment in itself.

At one point we three moms are sitting at tables chatting, and I realize I have no idea where either of my kids are. Anna I know is fine, but it takes everything in me not to hunt Ethan down. A year or two ago there would have been no way...I would have been petrified to find him off in the bathrooms or running out the door. When I do spot him, he's climbing in the playscape, not really hanging with his friends, a bit burned out by two hours in this sensory-overloaded place. But -- for five minutes I'd chatted and let my kids do their thing.

I felt, for the first time, like the parent of school-aged kids and not little ones.

That was a little bittersweet, but rather freeing.

There are times I know I have to live in the now. It's really where we all should live as often as possible. My now is a time before my daughter is a teenager and quite possibly thinks I'm completely humiliating. Now is perhaps, I know with Ethan, this innocent space of time where he can play and goof off with both typical and not-so-typical kids while they are still young enough not to notice or dwell on their differences.

The Chuck E Cheese band, for some absurd reason is belting out the old song "Head Over Heels" by Tears for Fears. I sit for a moment and think and let the end of the a song, those chanting, sing-song notes that run through my head in quiet hours of the night, that strange, stick-in-your-head melody:

La La La La La
La La La La La
La La La - La La La La La La
In my mind's eye
One little boy, one little man
Funny how...time flies...

Tuesday, February 19, 2013

Confessions and Conversational Speech

Confession time, once again.

In the last few weeks, we've had a blizzard, winter break, and two colds, one for each kid.

Our vacuum has been away for repairs for two weeks, there's dust everywhere from the plaster we used to patch the area in the living room that had leakage from the snow on the roof from afore-mentioned blizzard, and the kids (particularly Ethan) have had much more than the appropriate amount of "screen time."

Ha, how I used to judge! I used to leisurely stroll the aisles at the supermarket and scoff at the mom seething at her child through clenched teeth. Even after Anna was born, I felt as if life with kids was so manageable, or easily managed. She had her half-hour of Sesame Street, and then we were on to more engaging pursuits.

When Anna was about five and Ethan was two, in the midst of his year of therapy sessions, every day seemed like a mad dash of driving here or there and ringing doorbells and getting Anna settled in school. There was barely time to breathe, never mind vegetate on the couch.

The year after that I was so used to running around and having Ethan in therapy that our lives continued to resemble one long therapy session. Free time in the afternoon or on snow or vacation days from school meant play sessions and productive, creative activities like crafts with shaving cream and glue (about as complicated as I get) and obstacle courses and puppet shows.

Then, after awhile, Mamma got burnt out.

Here I go talking about the developmental pediatrician again, but last year when Ethan had his appointment, I was talking about how I had tried and tried to get Ethan to play "appropriately," and that I worried that he seemed to want to spend so much time on the computer or watching TV. She shocked me by replying, "He may need more time than the average kid doing things like that. That's okay. That's how he'll pick up ideas."

And so, little by little, I began to let go of our lives looking like something out of Family Fun magazine, or like the autism therapy websites I'd been pouring over.

Does this mean I never do anything creative with my kids, that I cop out all of the time and let them take the lazy way out with entertainment? Nah. Anna and I made block houses for her My Little Ponies the other day. And Ethan and I have been engaging in some fun Ninja fights. I'm talking about letting go of the pressure. You know? The pressure of being the perfect mom. The pressure of feeling like I have to do everything a certain way or I'm going to irreparably damage my children.

This is the shocking thing. Call it coincidence, and it may well be. But: okay, I'll come right out with it. Let's just say Ethan's time playing Angry Birds Star Wars and Dinosaur Train and ninja computer games has measured closer to hours rather than minutes lately. And yet, when he's not doing those things, I've noticed a burst of language, or conversational speech, and even some creativity.

"Mamma, come here, I have a problem..."

"Daddy, I have some bad news..."

(Hands over eyes in circles) "These are not binocular eyes, they are my seeing eyes!" ...

"Daddy is going to be so happy when he sees I picked up all of these puzzles..."

(Noticing a puzzle piece is missing) "Oh no, Cookie Monster's mouth is missing. Now he can't eat..."

(Picking up two My Little Ponies) "You be this pony and I will be that one and let's make them play together..."

These would be little things except to those who are around Ethan all the time and notice the difference.

So, does that mean I have a free pass and can let Ethan devour as many computer games as he wishes? Of course not, but it reminds me once again of several truths:

I don't have to do it all.

My kid is wired differently, and the conventional wisdom out there might not always work or be true for him.

And most of all --


Friday, February 15, 2013


Valentine's Day.

I sit with Ethan, grabbing the opportunity when he seems motivated to stay at the table, to sign his name to valentines for his classmates.

I look at his name. I remember last year, how I had him trace. This time around, his writing hasn't improved all that much. His scratchings are still faint -- he has a lot of trouble bearing down with the pencil and writing. But he can write his name independently, with a little guidance. More importantly, he doesn't mind sitting down and writing. He thinks it's kind of a game, trying to get through all his classmates' names.

In the car, he asks anxiously, "Do we have my cards?" I assure him the valentines are in his backpack.

At school, a friend approaches him. "I have a surprise for you in my backpack!" he says.

"Well, I have a surprise for YOU in MY backpack," Ethan responds. They rush into the classroom, ready to party.

Beach erosion, I keep thinking. It's the analogy his developmental pediatrician mentioned last year, the way Ethan grows and develops. Maybe all kids are like this in some ways. All kids at times have explosions in their development. Other progress occurs much more slowly...like the waves lapping away at the shore, month after month, year after year; changes measured in inches...millimeters. You have to understand: it's not about ebbing the autism out of him, wearing it all away. It's about seeing the new ways in which he links in to the world around us, the ways he is able to understand and connect.

Two years ago he was oblivious. A year ago I forced him to fill out valentines and then gave up. This year, he understands a little bit more about this holiday that is really, not much more than cliché and convention. And while there is no way of knowing when he may get the deeper nuances of love and affection, of dating and sweethearts and romance, today I can rest knowing: my boy wished me Happy Valentine's Day.


Monday, February 11, 2013

Soccer, Take 1

So, we decided to sign Ethan up for a six-week indoor soccer course offered by our town.

I'm not quite sure why. Ethan's never played soccer, never talked about playing soccer, and has yet to understand the rules of the game. But he does seem to like playing anything that involves a ball.

Originally we had him in a 3-5-year old class, but that was cancelled due to lack of participants, so he was bumped to the 4-6 year olds. This made me just slightly apprehensive. I knew some of these kids might already have played soccer. Ethan most certainly had not.

We arrived at the gym in the community center last week right on time. Snow was coming down outside. The first thing Ethan noticed were the basketball hoops. As the "coach" (a guy about 20 years old) had them all run out to start kicking the soccer balls around, Ethan immediately picked up a ball and begin trying to shoot baskets. Darn. I'd forgotten how much he likes basketball.

"Hey, buddy!" the guy called. "You can't touch the ball. Kick it." I realized that while I had marked on the sign up form that Ethan has "mild autism," I hadn't had the usual chat beforehand with the instructor to give a heads-up. Oh well. There was no time now. He was already out there, running around the gym with the kids.

Thankfully Ethan put down the ball after a few minutes and started kicking it around. This would become a trend for the hour: Ethan doing his own thing, then looking up a few minutes later and seeing what everyone else was doing and attempting as best as he could to copy.

As I watched, it was hard not to feel conflicted. Never before had I seen played out before me so clearly what it means for a child to have "processing challenges." I'm not sure exactly what goes on in Ethan's mind, but I think it's something along the lines of this: he's got so much to take in around him. There's the squeak of the gym floor, the sounds of the other kids, the allure of the basketball nets. Everything is maybe bigger or louder or more pronounced than for the average person. It's harder for him to filter out what's not important; to multi-task and switch quickly from one activity to another. Add to that a guy talking quickly halfway across the gym, giving instructions about things to do with your body, and using all sorts of slang terms (like "bring it in!" for when he wanted them to come to him with the soccer balls), and Ethan seemed to always be about two minutes behind. He'd finally get what he was supposed to be doing, and they'd have moved on to the next step.

However, he was having fun. I had to leave for awhile with Anna to do an errand (Dan stayed behind) and when we came back, the kids were involved in a "game" of sorts. I'm not sure if Ethan knew which net he was supposed to be kicking the ball into, but he was in the middle of the horde of kids, racing, sweating, laughing...never quite getting the ball, but having fun trying.

When everything was over, we asked him how he liked soccer.

"I wanted to go to BASKETBALL practice, not soccer," he said, although he didn't seem all that upset. I told him they didn't have basketball practice. You better believe I'm going to find out if they are going to.

All of this left me thinking about why we do the things we do. Was I signing Ethan up for soccer for me, or for him? At what point do we decide to either have him play along with typical kids and struggle a bit or find a program for kids with special needs? How much does all of this matter, as long as he's having fun at whatever he's doing?

The next class is tomorrow. Stay tuned.

Wednesday, February 6, 2013

A Conversation

We were riding in the car this morning, and Ethan seemed unusually chatty. Normally, our conversations are a little spotty because he's monitoring all of the stop lights or traffic signs.

My son talks my ear off every time in the car with all of his questions, a mom of a boy the same age said recently. And while I could completely understand where she was coming from, I simultaneously wished Ethan would be just a little more inquisitive...a little more curious.

"Where do you go to the bathroom, if you're in an airplane?" he asked out of the blue.

"Um, there's a bathroom in back of the plane," I responded. "I don't like those bathrooms. They're very small and the flusher is loud."

"Where is there a plane with a quiet flusher?" he asked. I told him I didn't know.

"Well, where does the pee and poop go?"

I thought of our Usborne book about airplanes. "Uh, it goes into a tank," I said, never one to be too technical. "Then when the plane lands a truck comes and sucks all of that out."

Ethan switched gears a little. "How do you not fall out when you're in the airplane?"

"Everybody wears a seatbelt."

"They do?"

"Yup. Just like a car."

"But what if there's a hole in the plane and you fall out?"

"They make sure the plane is closed up really tight and locked. It won't open up."

"But what if the locks break?"

He finally had me stumped.

"Don't worry about that. That's not going to happen," I told him. Never mind that flight to Hawaii a few decades ago, the one where hole opened up in the plane's roof.

Ethan fell silent, and I thought about the way some people may have conversations like this with their little ones all of the time.

This was new territory for us. I'd never been asked so many questions in one sitting.

Which made the whole two-minute exchange so very sweet.

Sunday, February 3, 2013


"Every new day begins at midnight." - Jason Upton
I've been kind of quiet here lately. Lots has been going on with my family...with me.
Do you ever have those times when you feel like a cat chasing its tail? Like you're grasping for something elusive, something just out of reach?
Or maybe like a hamster in its wheel, wearing out the same worn path, spinning but not getting anywhere?
It's so easy to get discouraged when we don't see visible change -- like waiting for spring after the calendar has changed to March 21...or peering out at a seemingly empty garden just after seeds have been planted.
There are times it can be so easy to look at the world, our tangible surroundings right front of us and believe nothing's going to change.
But I love to think of midnight -- the clock turning over in pitch darkness. A new day comes but takes time to look like anything different than the dark hours that have just passed. I love to think of the seed sprouting...the glorious transformation from caterpillar to butterfly, while still in the cocoon.
Sometimes we must remember these things. We must remember that some of the most glorious gifts awaiting us could be right there, so close, still hidden until just the right time. At some point, the sun will rise. And we will see.