Tuesday, April 30, 2013

Trouble on the Playground

Every day after school (and I mean every.single.day) Ethan and his friend B. get out of school, run past the kids walking to their buses and race to the playground in back of the school --

and I step into my role as mediator, negotiator, and ambassador of pretend play.

The boys are five now. Kindergarten is calling. The pretend themes are getting more complex out there, and Ethan spends a lot of his time back in the world of Parallel Play. He uses up his social and imaginative energy in school. By the time he races out the doors, he's spent. Fun playground time for him right now is challenging himself: how many times can he climb up the slide? How many seconds can he hang from the high bar? Can he make it across the really hard monkey bars? He doesn't mind his friend's company after spending the afternoon together in preschool. He just doesn't want to spend another hour outside playing exclusively with him.

His friend B. is about as accommodating as any five-year-old can be. He patiently waits and plays Ethan's games (we've turned Ethan's self-imposed challenges as a kind of "Playground Olympics"). He chases Ethan around when he's not listening, attempting to get in his face and make him understand, make him really hear him. He's not one to give up easily when Ethan gives him no encouraging visual cues (such as actually looking at him while he's talking) or doesn't respond to his overtures. He keeps prattling on, doing his best to persuade, to cajole, to convince.

But even the most patient child has his limits, and just as Ethan is burnt out from too much playing, B.'s patience is wearing thin.

And as much as I talk about acceptance and as much as I love my boy and don't want to force him to do what doesn't come naturally, a part of this still breaks my heart.

I met with some of his teachers to talk about this, to ask their thoughts on how much to push and how much to accept...how much to expect Ethan to get along with others and how much to expect others to accommodate him. He's doing great, they reassured me. You have to know how well he's doing and what a good kid he is. But (isn't there always a but?) he has his challenges. There are things that don't come easily. He may just want to play alone and be perfectly happy. He can't feel too much pressure out on the playground that you're trying to force him to be a friend.

Of course I know all of these things. I know all these things, and yet on the playground yesterday, I felt my impatience bubbling over.

B. had played Ethan's game already. He just wanted to play ice cream shop for a few minutes. Ethan had promised he would play B.'s game. Even that came only thanks to urging from me (Just five minutes! You can't get extra TV time if you don't cooperate and play your friends' games). Yet when the time came, Ethan ran away and started doing something else, the way he almost always does.

"C'mon Ethan! You be the cashier and I will order ice cream!" B. called.

Ethan stayed over next to the metal music keys, pounding out notes.

"Ethan!! It's time to play my game!"

"I don't want to play that game."

"But you PROMISED!!" B.'s tears were almost starting. "If you don't play, I'm not playing with you anymore. You never want to play any of my games."

B.'s mom, trying to salvage the situation and alleviate pressure off of Ethan, went over and ordered some ice cream. Ethan headed over to the swings. He was completely un-phased by his friend's reaction. I saw him gazing over at the monkey bars. I could see his mind was still on 15 minutes before, on the activity he hadn't wanted to stop doing to be "inconvenienced" by play with a friend. "I met my challenge," he was saying to himself quietly. "I can do the hardest monkey bars now. I am a big kid."

B. was still hollering at Ethan. "Run around and tell everyone about our restaurant, Ethan! We have to get people to come and visit!"

Ethan didn't hear or didn't care. I sat there straddling the line between letting him bask in his monkey bar accomplishment and trying again to teach him about being a good friend. How can I, I wondered, when he just doesn't care yet?

How can I show people out there that my son isn't just being a selfish brat? How can I expect a five-year-old like B. to understand, when Ethan's teachers say they sometimes have trouble getting other non-special ed teachers to understand that these kids really are wired differently?

How could I let go of my expectations and simultaneously let go of caring about others' (sometimes unrealistic) expectations?

How could I stop caring so much that my son, at the moment, doesn't care about playing games that seem so simple to the average kid...games that instead of being fun and exciting to him equal stress and misunderstanding?

The more I thought about it, the more I realized that some of the biggest trouble on the playground had to do with me.

We'll be back out there again today. The answers aren't much clearer, but I know this: I have to learn to step away from the role of negotiator, of play teacher-in-chief, and sometimes let the chips fall.

I think I avoid this sometimes, because I know the results will be painful -- for me.

I know Ethan may drift away from friendships if he can't sustain his side.

I know, right now, at least, that won't bother him too much.

And that hurts.

Friday, April 26, 2013


"Can we read this?" Ethan asked the other day, holding up a picture book that's sat on the bookshelf for years.

I looked over at the cover. The book in his hands was not his, or Anna's. It was mine:

Ouch. Ethan didn't realize he'd hit a sore spot.

I've written before about my love affair with the Quabbin Reservoir in central Massachusetts, near where I grew up. Four Massachusetts towns were flooded; disappeared under water when the reservoir was built in the 1930s to supply the city of Boston with ample drinking water. We used to picnic by the water and race down the grass slopes of the Goodnough Dike with cardboard boxes like sleds. We'd take walks down to the one abandoned town green above the water line and look at old cellar holes. I've always loved the beauty; the melancholy feeling to the place.

You know how when you're a kid, you have these big dreams? You just know you could be an astronaut, or a famous actress, or write a book. For the longest time I thought I'd be an author, but as time went by I realized I wasn't much of a book writer. I preferred short, topical pieces. Except when it came to the Quabbin.

I always thought if I had one book in me, it was about the Quabbin. I've had an idea percolating for years about an adolescent girl, growing up in the years that the towns began to slip away. I could see it all play out. I could feel her pain as she watched childhood slip away, figuratively and literally, as her town was stripped of trees and the familiar buildings were plowed over or moved elsewhere. I had the idea 15 years ago, and began doing research, but then, you know. Life came along. Kids came along. I always figured I could sit down and pick the whole thing up again someday.

A few weeks ago, I finally decided to buckle down and start writing. I was excited. I was inspired. I went online and was

...shocked to discover someone had already written my book. Eleven years ago. Exact same story. Same reservoir and dying town. Same adolescent girl.

I stared at the glowing online reviews and told myself all the things that we tell our kids, that of course I could still write a book and I shouldn't give up on a dream. But the realistic adult voice overpowered that it just wasn't the same now. Someone had gone before me; someone who, if I was honest, probably wrote it better than I could have. And so I stopped and tip-toed away from the idea I'd held close for so long.

And now Ethan stood with this picture book I'd bought long ago about the flooding of the towns, "Letting the Swift River Go." It's a beautiful book. It's one of the most beautiful children's book's I've ever read.

It's also long, and I thought the ideas would be too complex for him.

"Are you sure you want to read this?" I asked.

"Yes! Please read it!" he begged. And so I started with the story, and waited for him to lose interest.

We got to the page where the people are learning their towns will have to go.
So it was voted in Boston to drown our towns
that the people in the city might drink.
"I don't want them to do that!" Ethan exclaimed, upset. I looked at him, amazed. He was getting this?
Then the governor sent his "woodpeckers"
to clear the scrub and brush,
to cut down all the trees: the maples and elms,
the willows and scyacmores, and the great spreading oaks.
They were stacked like drinking straws along the roads,
then hauled away.
Ethan's eyes were filling. "I want to take my light saber and destroy them for doing that." I kept reading and as I did, I could feel my throat catch:
Our houses came next.
Some were bulldozed.
One great push and they went over
after one or two centuries
of standing strong
against wind and snow and rain. 

"They can't do that! They have to ask first!" Ethan was saying indignantly. The tears were clouding my eyes, and I didn't know if it was because again, this was the one story I really felt above all others and had dreamed of writing about and wondered now if I ever should, or if they were for the people of those long ago towns, watching their memories sink under the waters, or if they were joyful tears, because this boy who has trouble with critical thinking and understanding complex themes got this one, this precious backdrop to my growing up years.
I think it was a little bit of everything.
Sometimes dreams have to be adjusted. Sometimes we let go and it hurts...while we simultaneously discover other beautiful truths.
Ethan went upstairs to get changed. We were headed outside for a walk, to drink in the beauty of a clear spring day.
Author's Note from Letting Swift River Go
The Quabbin Reservoir is near my house,
one of the largest bodies of fresh water in New England.
It is a lovely wilderness;
eagles soar overhead and deer mark out their paths.
But once it was a low-lying valley called Swift River,
surrounded by rugged hills.
There were towns in the valley filled with hardworking folks
whose parents and grandparents had lived there all their lives.
Then, between 1927 and 1946, all the houses
and churches and schools -- the markers of their lives --
were gone forever under the rising waters.
The drowing of the Swift River towns
to create the Quabbin was not a unique event.
The same story -- only with different names --
has occurred all over the world
wherever nearby large cities have had powerful thirsts.
Such reservoirs are trade-offs, which like all trades,
are never easy, never perfectly fair.

Tuesday, April 23, 2013


Look closely - can you see him?
Sunday morning, after church: our usual time for Dan and the kids to get haircuts.

We walk into Cost Cutters, and I remember. I remember my trepidation -- even greater, Ethan's. I remember the way we used to have to go to the expensive, ritzy kid's place, because it had toy cars to sit in and cartoons on the screen and lollipops. That was the only way we could make it through a haircut: bribes and distraction.

I remember sitting in this place waiting for Dan and Anna to get their hair done. I remember the subtle panic. Would Ethan swipe shampoo bottles onto the floor? Try to run outside? Roll around on the floor? How could we keep him occupied for a half-hour without making a spectacle? Lots of goldfish crackers were our friend.

I remember the first time we attempted cutting Ethan's hair at this place. We made it to the chair. Once she started to put the smock around him, he was done. A few months later, we tried again. We got a few snips in. Finally, when he was somewhere around 3 1/2 to 4, he sat all the way through. I hovered.

Just before he turned five, he let them buzz him for the first time. He still doesn't like the tickle. Now he manages to laugh, while still brushing anxiously at the little hairs around the back of his neck once he's done.

Most of them knew Ethan's background, but still for the longest time I hovered. I tried to fill in the blanks if they asked him a question and he didn't answer, or answered inappropriately. This has been an ongoing theme in public places. Over time, I've had to hover and fill in those blanks less often.

Yesterday we walked in once again. Ethan came when they called, and sat. I stayed in the waiting area and watched, listened.

"How old are you?" the hairdresser asked him.

"Five," he answered, holding out his fingers.

"Wow. Are you in kindergarten?"

"No. I'm in preschool. My sister is almost nine."

"Really? When is your birthday?"

"November 28. And Anna's birthday is June 18."

"Oh...is she going to have a party?"

"I don't know. Maybe!"

I sat there watching them converse, watching him follow the instructions to bend his head down or tilt it left or right, and felt a little bit of indignation.

I thought about Dr. Milanese, and her examining eyes, of her mentally clicking off social deficits as she assessed the way Ethan conversed. I wished she was there in that moment, although I knew she have her explanations as to why Ethan wasn't where he "should be."

No matter. Just look, I'd tap her on the shoulder and point. Just look and really see. THIS is progress.

Sunday, April 21, 2013

Put Me In, Coach

We've left the squeaky soccer gym behind and moved out to the baseball fields.

We found out last-minute the other day that Ethan's first t-ball practice would be the following day, weather permitting. He didn't even have a glove yet. So the next morning after seeing the rain had cleared and making a quick jaunt to Target, we headed over to Fitch Field. This was a t-ball clinic open to every child in town participating, which meant there were about a hundred other kids there. We made our way through the chaos and got his shirt and hat for his team (the Raptors!). We found the coach (thankfully, a family friend). We helped Ethan put on his glove and he got down to business.

And so, although the day was not devoid of its challenges (including Ethan's tendency to not want to look when throwing the ball, a bout of on-the-ground silliness, and a number of tears when he realized he couldn't field the ball every time), by the end of the practice, we'd learned something --

Ethan really likes baseball.

Why should I be surprised? What surprises me more is why we even bothered with soccer. I really don't care for soccer. I'm sorry, any soccer fans out there. It's just not my game. No one in my family played it; God forbid any of us ever watch it.

But baseball, ahhh. Ethan has baseball blood flowing through his veins. My (and Dan's) grandparents, uncles, cousins, mom and dad all love the game. My brother Nate played Little League for years and years. The Red Sox are like a member of the family. Ethan knows: we want the Red Sox to win, and the Yankees to lose. I've written about this before: the beauty of a game crackling in the background on a muggy summer evening; the green of the Fenway grass; the way baseball to me, baseball in its purest form (subtracting the bloated salaries and egos and steroid controversies) is summer and sweetness and childhood and chasing dreams.

Rather than being forced to stay focused and pay attention, Ethan wanted to keep practicing. And while some elements of the game are still over his head, and sometimes he gets really tripped up on instructions involving more than a few steps, he was out there on a spring morning tossing the ball, smacking it off the tee, running around the bases, unabashedly happy. Not forced or coerced. Genuinely having fun.

One hundred miles away, the Red Sox were in Fenway Park at batting practice, ready to bring a hurting city to life again after a horrific week of terror and tragedy, ready to play a children's game that somehow means so much more to so many people. And in our not-so-little town, a little boy was swinging at a ball with so many other five and six-year-olds, doing something we weren't sure he'd ever be able to do.

As Neil Diamond sings every Sox game before the bottom of the 8th: Good times never seemed so good. Or -- sometimes, thanks to baseball, the not so good times are made just a little better.

Thursday, April 18, 2013

Pushing Buttons

We are at Stew Leonard's, the Disney World of Grocery Stores, while Anna is upstairs taking a cooking class. Popcorn is popping, donuts are frying, bread is baking. There is octopus in the seafood section, the live "cow cam" near the milk showing the dairy cows up in Ellington, free ice cream, and the best looking vegetables I've seen in a long time. This place makes brussel sprouts look good.

Here we are, and Ethan is all about the buttons.

Ethan is all about the buttons, because Stew Leonards is also sprinkled with various animatronic characters throughout (think singing sticks of butter, or roosters, or milk cartons). Brightly colored buttons to make them come alive are everywhere; kids are invited to touch. Ethan takes this responsibility to heart. In other words -- he doesn't care about much else.

I am there with another mom and two of her kids. They love the buttons and characters too of course, just not with such laser-like focus.

"Look!" the other mom might say, calling the kiddos' attention to a video playing on a nearby screen. "They're making cheese!" Or, "See all the different kinds of peppers?" In the seafood section, the other mom explains the countless types of really tasty looking fresh fish spread out. "What's this one?" her daughter asks again and again. "What this one?"

I try half-heartedly to engage Ethan in his surroundings. "Look at all of this fish, Ethe! Look! There's octopus!"

Ethan in counting on his fingers. "I've done six buttons! I need to find some more. I want to fill up my buttons!" I think he means press 10 buttons, representing all the fingers on both hands. "Where is the man with the tractor?" he asks.

We visit this store about once a year. The last time was New Year's Eve, four months ago, and Ethan remembers with stunning accuracy each animatronic figure and where all of the buttons to push are.

"Mmmm, see all of those steaming soups!" I point out lamely, a few minutes later. At the bakery section: "Look at all of those cookies they're baking!" and "See that on the TV? The guy's making pizza dough!"

Nada. Not a glimmer of interest, and for a few minutes, I'm annoyed. Maybe annoyed isn't the right word. I can't be annoyed when I see how happy he is, racing to find the next button. He's having fun in his own way. Maybe what I feel is frustrated -- because there's so much to see here, and I want to show him.

Then I wonder if this is how my family felt.

I don't know if I was one of those toddlers always asking "why," but I can tell you this -- I was a school-aged child who, curiously enough, wasn't very curious.

I rarely asked how things worked. I didn't particularly like new experiences. I wasn't a child bubbling with questions that needed to be answered.

I remember my grandfather, who always liked to get educational gifts. I remember him buying me a coloring book about wildflowers, and my disappointment when I saw the book was actually trying to teach me something, that they wanted me to color the flowers so they looked like the examples of the real flowers in the back.

I never touched it. The only educational gift I ever enjoyed from my grandfather was the "Look It Up Book of Presidents." I mostly looked at the back, the place where they listed each president and how he'd been rated by historians (Warren G. Harding: Failure. Abraham Lincoln: Outstanding). Oh, how I loved looking at that list.

When I was a kid, I adored reading the same beloved books over and over. I loved building Lego houses and then having them destroyed by some calamity. I played the same familiar games outside with the neighborhood kids again and again. I loved my lists in notebooks (Top 5 Songs of 1988! My Favorite Sitcoms of All Time!).

This is sad to admit, but once I reached the age of, I don't know, 20, I realized I hadn't been paying attention to a lot of the world around me. I didn't really know how to do much or know much about how the world worked. This is mortifying to admit, but I'll never forget the day we were riding down the Mass Pike and I admired the rock formations on either side of the road.

"Well, that's because they blasted the road to make the highway. You do realize that, right?" someone said to me. And of course I realized I must have known that. Although maybe I didn't. And this wasn't a blonde thing. I'd always been a good student. I had book knowledge. I just wasn't focused on anything outside my realm of interest. And so, I knew a lot about the Red Sox opening line-up or  the number one song of the year in 1987, but not so much about how to make a good pancake. Or iron. Or plant flowers. To this day I get nervous helping someone else in their kitchen, because of my lack of skill with a paring knife or my fear that I'll load the dishwasher wrong.

Back to Ethan. I look at him, his eyes shining at the prospect of the next character singing, his eyes seeing nothing else. I look at him, and I can't be as frustrated, because I see myself. Not only that, but I know that there's time.

It took me years and a lot of "...For Dummies" books, but I know a lot more than I used to. Better than that, I'm a lot more curious than I used to be. I know the difference between a daffodil and a crocus now. My pancakes are getting better and better.

And his seeds of curiosity are there. Just the other day the grandparents were telling us how Ethan had been talking their ears off with "why" questions.

Someday, I think, he will want to know more. Especially if there are no buttons around.

Tuesday, April 16, 2013

Life Snippets

I was going to write about Ethan's latest antics on the playground, or about our frustrating struggle with insurance companies, or my ongoing questions on the diagnosis of autism vs. PDD-NOS.

But...it's spring, even if it hasn't always felt like it, lately. And the kids are home on break. And the little things are precious.

And so...

King of the playground

Just before the park egg hunt

We do "minimalist" Easter baskets!
Easter morning

I've always loved shadows...
Oh, how Anna loves to read
Badminton at the grandparents'
Funky view looking across the Connecticut River to Agawam, Mass. at sunset
A quick trip to Maine

Morning light at Dan's grandparents' house
My nephew's 2nd birthday cake(s)

Kitty love

Lunch at a Maine McDonalds with cousins
Building with dad
Ethan officially knows how to pump!

Anna officially knows how to ride a bike!

First visit of the year to Northwest Park
This hangs in my sister-in-law's kitchen

That last one kind of says it all for me right now.

Tuesday, April 9, 2013

Point of View; Literally

Theory of mind is the ability to attribute mental states -- beliefs, intents, desires, pretending, knowledge, etc. -- to oneself and others and to understand others have beliefs, desires, and intentions that are different from one's own.   - Wikipedia
There's been a lot said about the way people with autism seem to lack Theory of Mind. I'm nowhere near an expert on the subject but I see this as ranging from a person who has trouble seeing another's point of view, to one who literally has no concept that the person next to them has their own internal thoughts and feelings.
I've often wondered about Ethan and Theory of Mind. It's a hard thing to track in a person, especially one so young. Even typical kids his age are pretty egocentric and aren't exactly moving into abstract areas like considering a problem from another person's perspective.
Sometimes, though, I get little hints. When he used to play Hide and Seek and forget to truly hide, or tell me where he was hiding, I wondered. I wondered what clicks in a child's mind to help him see that hiding was also perspective taking -- thinking about where a person might look or not look, to realize that hiding in a certain spot might not be good because the other person might find you quickly or easily.
If you lack Theory of Mind, you'll never be good at Hide and Seek.
And so, Ethan has always loved Hide and Seek but for the longest time was a horrible hider. He's getting better, bit by bit. By "better," I mean he tries to hide. Something is starting to click. Something that says If I do this the other person can still see me. And so, it's Hide and Seek, but it's more than that. This is big.
A few days ago, Ethan was building train tracks at the top of the stairs. "Come and look!" he called to me, and so I walked up the stairs and took a quick peek from the second stair from the top. "Wow, I see it!" I replied excitedly.
"How did you see it? Where did you see it from?" he asked, walking over. I told him.
"You could see it from that step?" He came closer. He stepped on the step to see if I was telling the truth.
The next day, he built a huge block tower with a path of blocks leading to the front and from the back of the tower. Again, he called me to see.
"There's a path in the front and the back," he said proudly.
"I know. I can see it from here," I answered.
"You can?" He seemed surprised. Again, he walked over to where I stood, seeing for himself.
In that little moment, I knew. I could almost see the wheels turning in his brain. I'm no scientist; I'm just a mom. But I could see how Theory of Mind takes shape. It IS all about taking another's point of view. Sometimes literally. Something in his mind was saying, She's over there. It looks different from over there. I have to see for a moment. I have to take a look.

Friday, April 5, 2013


I try the handle on the bathroom door. It's locked. "Ethan, what are you doing in there?" I say with growing suspicion. No answer. Then the sink turns on, for a long time. Way too long. "What are you doing?" I demand again. Still no answer, and then, one of the most weighted words a child can ever say, in the small voice that implies just the opposite..."Nothing!"

Lying is a serious infraction in our house. With Anna, we've reiterated that there is almost nothing as disappointing as when she chooses to lie to us. I'm sometimes amazed at how easily the lies roll off her tongue. Really, I'm amazed at how inventive, how effortlessly most kids lie.

And then we have Ethan. Oh, Ethan.

How sad is it, first of all, that lying is a milestone; a sign of typical development? I'm reminded of a report on 60 Minutes I saw not long ago, on a fascinating study done at Yale that appeared to prove  babies are not naturally sweet and innocent but very obviously sinful -- biased, preferring revenge, self-seeking.

Yes, lying is a sorry part of the human condition. Some tend to pull it off better than others. I am a horrible liar. I just can't do it. My eyes shift all over the place, my voice gets weird, and inside my conscience screams. I have a laundry list of faults and failings, for sure, but being deceptive is not one of them.

And so, Ethan. He tends to move through certain developmental stages at a snail's pace, giving a bird's eye view of all of the little steps that go into one complete milestone. I'd never really thought to analyze what goes into telling a good lie. Now I see that there is, indeed, a lot. Especially, as his Favorite Therapist in the World used to say, for a boy who "telegraphs" everything mischievous he's going to do before (or just after) he's done it.

The other morning, I told Ethan Angry Birds were done and that it was time for breakfast. He responded with wails and protests that he wasn't hungry. He's always "not hungry" when he's asked to stop doing something he really wanted to be doing. The appetite "magically" returns once he's calmed down.

This time, though, he wasn't calming down, because there was something he had been trying to unlock in Angry Birds, and he hadn't had a chance to do it. And so, he wasn't hungry, breakfast was terrible, the bagel smelled weird.

"I can't eat this!" he protested.

"You will eat at least some of your breakfast," I replied. "You like bagels." I went into the other room to do something. A few minutes later he came bouncing in.

"You're done?" I asked, incredulously. "You ate your bagel?"

"Yup. I ate my breakfast," he answered happily.

"I think I'm going to go check," I said, heading towards the other room.

"No!!" he shouted. "Don't go in there!" And then, panicked, "Don't look in the trash can!"

I open the lid. Sitting on top were two bagel halves, completely whole. Not a bite taken.

"We'll get this thing down. He'll get it eventually," I'm always saying about Ethan and certain milestones. I can't say I'm rooting for Pinocchio. But lately every time I'm trying to remember that lying is a serious thing in our house, I'm simultaneously trying not to laugh.

Tuesday, April 2, 2013

Forgetting the Score

"So, how would you like to proceed from here?" she asked as the appointment concluded. We were there at the developmental pediatrician for Ethan's third appointment since his initial diagnosis.

"We could meet on an as-needed basis, or next year, or however you would like," she continued.

I heard what she was saying without saying, following this rather run-of-the-mill meeting. There were no surprises, no sweeping exclamations about how well Ethan was doing.

The fact that she didn't really feel the need to see us back in a year spoke volumes, told me what I knew but still didn't quite want to acknowledge.

I saw what she was saying without saying, laid out in an email on my computer screen a few days later. I always tend to remember things after I meet and talk with people. I'd emailed a few questions about Ethan, his development, and his diagnosis.

I agree that 299.00 [an autism rather than PDD-NOS or Asperger's diagnosis] best captures Ethan, she wrote, although, as you say, he is certainly not on the severe end. I didn't re-administer the CARS2 or ADOS but I think that "mild" best captures him.

The first year Ethan had scored surprisingly high on the CARS (Childhood Autism Rating Scale) assessment. The next year his score had gone down considerably, and last year it had leveled off somewhere in the decidedly "mild" classic autism range.

But now, here we were, 3 1/2 years into this, and the doctor didn't feel the need to re-run the assessment.

What I can't so easily predict for, her message continued, is how he will respond to increasing social and communication challenges going forward, especially as things become less concrete and more conceptual.

You see, this is the thing, the thing about these meetings with the experts. You know in the back of your mind what they're going to say. You often agree with much of what they say. Yet, it still kind of hurts to hear them say it.

I knew why she didn't assess Ethan formally again -- because he's five now, and he is, in her opinion, about at the spot on the spectrum where he's going to set up camp and reside.

And while I know there is some truth in that, and I know most kids don't magically lose their diagnosis, something about that still seems wrong. He's five.

For most of the day after reading the email, I pondered and ruminated. I thought about the concern she expressed about the future, as the world around Ethan grows more abstract and conceptual. It's something Dan and I have discussed many times. The more I thought, the easier it became to pick up the burden of trying to solve everything and predict the future and make my son into someone he's not.

But while cleaning the tub of all things, I was struck by this. The simple thought. We love him where he's at. We have to love him where he's at.

The way God loves us. Thank God we are not approved of only when we're cleaned up, dusted off, made and molded into perfection. No. He meets us where we are. Thank God. Because I am so far from scoring the perfect score.

"Guess what we're learning NOW?" Ethan said as we drove away from school that afternoon. "We're learning about the letter 'D.'" He told me words that start with the letter, about drawing upper and lower case "D's". He gushed about doing a cartwheel in gym. He instructed me about handstands.

After dinner, I heard Dan and Ethan working together to build a simple wooden model of a school bus that he'd gotten for Easter. I listened. He wasn't being commanded to sit at the table. He was looking at the directions and helping Dan follow them; hammering nails with assistance. "Look!" he exclaimed proudly when they finished, holding up the bus for me to see. His eyes were bright.

You know, as I started writing this I had forgotten today -- April 2 -- is Autism Awareness Day. Some like to add Autism Acceptance Day to that as well.

Sometimes, I wonder if part of awareness and acceptance is to not just view people with autism through our typical eyes, to see progress as only them becoming "less autistic" and more like the rest of us. That can't be the only way we measure their accomplishments; their worth.

Sometimes, after assessments and appointments, I have to remember first and foremost: Is he happy? Does he feel loved?

Not -- what did he score or not score?

We have to work with them to give them the tools to get along in this world. Becoming more connected and engaged is a good thing. But the true gains, as with any of us, come when they are the ones choosing to connect and engage. A spark ignites and they decide, like Ethan, to sit and work on the bus; to share excitedly about school.

It's not progress when they are coerced and forced, molded into someone's else's ideas. Not when we work to fix. Not when our relationship, our interactions, aren't rooted and grounded in love.