Saturday, July 30, 2011

It's All in How We See

We were driving around in Glastonbury, near where Anna was having art camp. In fact, Ethan and I were killing time before we needed to pick up Anna from said art camp.

"Miss D is that way!" he pointed. Well, actually he said her real name, but let's just keep it at "D."

Indeed he was right. The medical complex where "D," his outpatient occupational therapist in addition to Birth to 3 for just about an entire year, was was just down the street.

"Do you want to go see her?" I asked on a whim.

"Yeah!" Ethan answered. He answers yes to almost everything these days, even if he means no, but he seemed enthusiastic. As we drove, I began to feel trepidation. We'd never formed this deep, bonded relationship with D. the way we had with some of the Birth to 3 therapists. I think some of that had to do with the fact that we saw her just once a week at an office rather than several times a week in the comfort of our home.

That was one reason.

When we got into the blessed air conditioning, and they called D. from the back, and she came out behind the glass to talk and say hi and seemed genuinely happy to see us, I remembered the other reason.

As we stood talking near the bathrooms, Ethan, once he had said his hello, didn't feel the need to say much else. He instead went to play with the water fountain. He did this for a few minutes, and then actually started to kind of push his body along the wall near the restrooms -- something he rarely does.

Then I heard and remembered one of D.'s "clucks" -- these little sounds made under the tongue, accompanied by short sighs and sometimes shakes of the head, whenever Ethan was doing something "inappropriate." In that moment I could almost jump into her occupational therapist's brain and read her thoughts. "Oh, he's still doing that sensory seeking stuff, is he? Still distracted by that water fountain, too?" Oh Ethan, what are we going to do with you? she used to sigh sometimes during therapy, while shaking her head, as if he was some kind of lost cause.

This brought me back to the other appointment Ethan used to have with a speech therapist in this very same building. "J." was such a kind and well-meaning woman, but nearly every session ended with limited success. She appeared to say and do all the "right" things, therapeutically speaking. That was just it. Everything was running as if by a script, the kinds of scripts we encourage our kids on the spectrum to grow beyond. Let's play with the stove...stir the soup...Ethan, do you want some? Each word spoken painfully slowly, perfectly enunciated. Each play action crafted to match some milestone/developmental chart somewhere.

There was no heart, no connection. And I KNOW our kids can sense that.

At school this year Ethan was blessed with a wonderful and caring staff. We could have had it so much worse, I know. Yet few of them truly connected with Ethan. This certain therapist in particular didn't seem to realize (and I'm not quite sure how to tell her) that she overwhelms him. Ethan takes a little longer to respond than the average kid. Apparently that doesn't fly in the school setting. In an attempt to be well-meaning and make sure he stayed on task and didn't get upset about having to go to school (which happened just once, maybe twice, and without a huge tantrum) she would nearly ambush him at the door with his schedule. Speaking in a language that I would almost call "special needs baby talk" she would slowly and loudly ask, "What are we going to do today?" and then have him point to every picture on his schedule and say it, and then whisk him off down the hall.

The one person he DID connect with at school, a para he had for a few months, would on the other hand stand back, smile and wait for him to approach. If he didn't, she'd say something like, "What are you being shy about, little guy?" with a laugh, tousle his hair, and say, "Let's go to class!"

Something Ethan's very favorite therapist in the world once said always stays with me. Jessica, from Birth to 3, is to this day probably one of Ethan's actual and only "friends," after his family. She came to visit the other day and he cried when she had to leave. He adores her.

"Some of these therapists," she had said awhile ago, "just need to just treat these kids as kids first and not kids with autism."

In some cases, of course, specialized training and approaches are absolutely necessary. There are reasons, very good ones, why people are trained to work with kids on the spectrum.

But what are they seeing when they first see our kids each day?

Are they seeing their "issues?" Are they seeing the lists and goals and explanations provided by all of their books? Or are they seeing the child? No kid just wants to be a problem to be solved. Some kids can feel when someone is solely trying to solve them, not connect with them. Ethan can spot this from a mile away.

I commend anyone who chooses to work with kids who have special needs. But I wish I could ask some of them -- urge them -- to see the child first. Then the special needs. Doing that, I believe, will give them the greatest potential for making that sought-after connection.

Friday, July 22, 2011


For the last three years, my in-laws have taken Anna and her oldest cousin up to Maine for a special "Grandparents' Weekend." Anna always has a blast, and our hope is that next year Ethan can go, too, but one thing at a time.

It's been interesting to observe Ethan's reaction to Anna's absence each of the past three summers.

The first year, when he was 20 months old, Anna came and went without his noticing. No waves goodbye, no hugs. When she returned, he looked at her and shrugged and then toddled off.

The next year, after she'd been gone overnight, I could tell Ethan was looking for her. Ethan was 2 1/2. "Anna?" he asked at the breakfast table. When she returned he gave her the biggest smile and a big squeeze.

This year, Ethan is 3 1/2. "Anna's going away on a trip for two days," I told him. "And Ethan will be sad about that," he answered, pouting. When they drove away, he began sobbing. "I need to go on a trip! They need to come back for awhile."

It's sad when more awareness brings a child a bit more pain. Yet still so sweet at the same time.

Yes, sweet progress. Thank you, God.

On a side note, I'm going to be taking a bit of a blog break for awhile. I'll still be blogging, just not as often. I'm realizing my priorities need to be in real life, not online, on my blog, or on Facebook, but I could never completely stop blogging. The stories just fight to get out. But for now, I need to learn to slow down, rest and spend a bit more time away from the screen.

Wednesday, July 20, 2011

Cracking Open the Door

Two moments yesterday nearly took my breath away:

My mom was visiting and was playing Memory with Anna in her room near the cool of air conditioning. Ethan was in there jumping on the bed and I was in the kitchen attempting to make a blueberry pie.

"Mom!" Ethan came in. "Come to Anna's room?"

I dutifully followed him. My son was seeking my attention, and I wasn't about to ignore him. I sat on the floor.

"Watch me!" he shouted, as he fell face-forward on the bed. I clapped. "Mom! Watch me!" he yelled again, and did the trick. And again: "Mom! Look!" There was no way I could get bored with this. He was trying to direct my attention to him to show me something. This skill, more importantly, this desire, usually emerges around 12-18 months. Ethan could have asked me to watch him all afternoon.

He fell face down on the bed and moved his arms back and forth. "I'm swimming!" he yelled. Then he moved to the other side. "I'm too deep!" Meaning the deep end.

"Go back to the shallow end!" I yelled, and he jumped to the other side.

Two hours later, I was in the kitchen making dinner and Ethan was at the table with a toy school bus. He's had this toy bus for months. All of the rubber wheels are gone (he peeled them off at different points).

"The girls are on it," he announced to me. He began gently rolling the bus. I dumped pasta in the boiling water.

"MOMMY!" I suddenly heard a screech. I turned around quickly only to realize Ethan wasn't talking to me.

"Mommy!" he yelled, as the bus tipped on its side. The "girls" inside were yelling mommy, scared.

"It's okay," he then said, in a reassuring voice. "Your mommy will be there soon."

He looked up. "The bus - his name is Buster."

Over a year of Early Intervention therapy. Six months of school. Hours upon hours upon hours of watching and sometimes trying to join in with me with pretend play at home. Every single moment of it was absolutely worth it to watch Ethan, really for the first time, come up with a pretend play idea completely on his own.

The best part? He was having fun. He was sitting at the table, waiting for dinner, amusing himself, and enjoying the tiny scene he'd created.

His world is expanding. I couldn't be more excited for him.

Monday, July 18, 2011

Lark Ascending

We were up in New Hampshire for a quick overnight with family and a day trip to Storyland. Dan and I arrived well after the kids, who had come with the grandparents. When we got there, they'd been there with their aunt and uncle and cousins for several hours. I put down my things and headed upstairs to the big room in the condo where they had all run moments before in a frenzy. When I reached the top of the stairs, I saw three kids in the huge closet, and one who was going back and forth between electrical outlets, pulling out and pushing in the plugs and trying to turn the lights on and off.

Just like that, I felt the air seep out of the balloon...those puffed up, greedy expectations that come when things are going well and hope is easier to come by.

We've had a good couple of weeks around here with Ethan. Lots of swimming. Lots of firsts -- like long overnight trips with the grandparents, going to the fireworks, sitting through a library story time, attending VBS at church with 100+ screaming kids and (wow!) even participating. We've avoided major meltdowns and played together as a great little team, Ethan, Anna and I. The problem is other kids. To my son they are still just so. darned. scary.

Or maybe it's the confusion of being in a different place...the anxiety of too many people or not having a set plan or schedule...the struggle to focus and distinguish between all of the noise and chaos that just comes when a bunch of people get together. He used to be miserable. Now he just shuts down. And again, the voice in my head is shouting, There's more to my boy than you see! I don't know how to calm him down so he can show you, but there is a different person in there who is worth getting to know!

When I was a kid, I LIVED for family gatherings with my cousins. As the oldest, I was the ringleader. For a brief time, I was even president of the "Cousin's Club." We played endless games of hide-and-seek. We spied on the grownups and got into mischief in my grandmother's attic. We stayed up too late on sleepovers and stepped into bee's nests and ate too much ice cream. We laughed.

When I stood there watching Ethan play with cords, apart from his sister and cousins (this continued into the next day as well), those were the pictures that flew threw my mind and caused the ache. We've worked so hard. HE works so hard. Yet still the basics of making a connection are so difficult for him. Of course I know he's only three. Of course I'm not conceding defeat. But sometimes still there is a part of me that sighs and acknowledges that things like get-togethers with the cousins are not the way I imagined they'd be.

That night I tossed in bed, knowing I needed sleep before a long day at the amusement park but having trouble finding it. A scripture kept rolling around in my head. Do not grieve, for the joy of the Lord is your strength. (Nehemiah 8:10)

What does that mean, I kept wondering, I kept asking. What does it mean for the joy of the Lord to be my strength? What IS the joy of the Lord? Where is that joy that is still possible even when all is not right?

I didn't get an answer. But I fell asleep.

The next day after we had done the park and listened to the kids laugh on the roller coaster and eaten pizza and gotten refreshingly wet on the flume and raft rides and hugged the princess and help row the pirate ship, our GPS somehow sent us home straight through the mountains. I still don't quite understand this, as a few years ago, the same GPS sent us an entirely different (and I'm thinking shorter) way home. But there we were, driving through the White Mountains to get to the Green Mountains of Vermont, and the sun was sinking low in the sky. Fields of corn spread out before us and mountain after mountain rose in the distance. Brown-eyed Susans dotted the roadside and people sat out on their screened porches of very old houses, drinking cold drinks and drinking in the early evening. In one town everyone was spread out on blankets around the town bandstand, waiting for the music to begin.

"Look! The clouds are closer!" Anna shouted. Above a shaft of sunlight was punching through a thick cottony cloud.

"That's because we're up higher," I said.

Around then I noticed the music coming from our XM radio. We were listening to the classical music station; it's the only way my not-so-cultured self would know that the work was titled "Lark Ascending," by the English composer Ralph Vaughn Williams (

The music meandered and swelled over us. It rolled on and up and over hills as we did the same. A violin soared, depicting the bird in flight, then swooped to the depths, back to earth. And all at once the song and the mountains and the sun and the little faces in the back seat were too unbearably beautiful, and I felt tears welling in my eyes behind my sunglasses. I kept them there and let tears fall but couldn't speak, because I knew I would not be able to put my thoughts into words.

I did not have an answer. I did not have resolution. But I did see for a moment. I saw the grandness of a Designer. I saw the beauty, the intricacy, the details around me that make life, life. I saw mountains that made me understand the word majesty. I saw people savoring the simple sweetness of a cold glass of lemonade on a midsummer afternoon...savoring life, breathing in each moment, the good and the bad. I saw how much was beyond me. I saw how on the grand scale, life is beautiful, even when it is not.

I wasn't reading a scripture. I wasn't listening to a sermon. Yet for a moment, I think I understood the joy of the Lord.

It's when I rise like the lark and soar despite everything around me.

It's when I dip into the valleys but am not choked by despair.

It's the song woven into to life around me, when I stop and listen.

It's the hand that steadies me and the arms that carry me.

It's the river that flows when I feel parched.

Sometimes, it's seeing beauty in the little things. Other times, it's looking beyond them to appreciate the grand scheme, the larger puzzle that one day will become completely clear.

That is joy unspeakable.

Tuesday, July 12, 2011

A Mind Made Up

VBS, Day 2.

While helping Ethan put his sandals on before we all hop in the car to go, I decided to give him a little "pep" talk. His first day ever of Vacation Bible School at our church the day before had gone well. We'd had an extra helper there just for him, and most of the time, he didn't need her. I'd noticed when dropping him off, though, that he'd had a bit of trouble adjusting to the chaos of about 15 kids running around one little room (before they joined the big kids upstairs). A boy asked his name, for example, and I don't think Ethan even heard him...or was too distracted by the noise to answer.

"Now Ethan, remember," I said in what was probably an annoying teacher voice. "When someone asks you your name, you say, 'My name is Ethan. What's your name?'"

Ethan grinned at this ."My name is Ethan," he repeated, still smiling.

"And if they say, 'Do you want to play with me?' you tell them, "Yes!" I continued.

"How about 'No,'" Ethan answered emphatically.

"Okay, you can tell them 'maybe,'" I conceded.

The boy knows when he's being pandered to.

"How about 'maybe not,'" he replied, without missing a beat.

Sunday, July 10, 2011

A Park Moment

One morning a few weeks ago, I headed to the park with the kids. We were meeting a friend and her son there, but I happily discovered upon arriving that two other moms I knew from town were there on the playground with their kids as well.

One of the moms I really didn't know well at all -- but we had chatted one day at a playgroup before Ethan started school. Somehow we ended up talking that morning about not only autism but the fact that she too has an adult brother with autism.

On this day that mom and I merely exchanged quick hellos; I spent a good deal of time gabbing with my friend. Once my friend had left, I noticed that while I'd been lost in conversation, Ethan was going down the double slide with a toddler girl racing beside him. The girl's mom was cheering her on, cheering both of them on. Ethan kept looking at this woman, straight in the eye, all smiles, calling out and talking to her.

"I'm going to do it again!" he shouted, glancing back at her as he raced up the slide.

I wandered over and felt compelled to speak up. I don't feel the need anymore to always explain Ethan's "back story," but at that moment, I did.

"You must have a special touch," I said to her admiringly. "My son's on the autism spectrum and doesn't always warm up to people so quickly."

"Really?" she said. "I have a brother with autism."

"So do I," I answered, and we spent several minutes exchanging stories, nodding as if we spoke each other's language. Her brother too was an adult with severe autism, who could not live independently. She too marveled at the broad spectrum that is autism, that there are kids today diagnosed that seem so altogether unlike the firsthand experience we had with autism, growing up.

"Your son, I wouldn't have known..." she said. "He's not what you picture..."

"So different than our brothers, I know." I felt as if we were twins, finishing each other's sentences. "That's why my parents didn't believe me at first, when I was concerned about him..."

We stood there for a moment, and Anna started playing with her little girl, who completely adored her, and Ethan was looking up at this mom again as if he'd known her forever. I had the uncanny feeling that I always had as well.

It was almost lunchtime. Five minutes later, we were all gathering our things to get going, exchanging informal promises to meet up again soon. As I grabbed the kids' water bottles and snack stuff I could only keep thinking:

Five moms at the park the morning. Three of them moms who grew up with brothers who have severe autism. What are the odds?

I thought of all the times growing up, when I felt as if I was the only one living my life.

That morning, I felt a smile and a whisper, a reminder that I didn't necessarily need at that moment, but was simultaneously grateful to have.

You're not alone. You were never alone.

Monday, July 4, 2011

Summer Snapshots

Since this is normally such a text-heavy blog, I thought I'd share
a few of my favorite photos from so far this summer...

Ethan attempting to jump rope

Anna after free face-painting at McDonalds

Ethan and his cousin in the ball pit/bounce house

Anna and Ethan on a Sunday morning

Ethan helps Dan with our new back deck

Anna (far left) posing for formal pictures with her ballet class

Brother and sister at Ethan's school, just before Ethan's last day

Enjoying cones while waiting for the train here in Windsor

Holding my newborn niece

Anna gingerly blowing out her birthday candles (she was
afraid because they were sparklers) with Ethan and her cousins

Anna relishing the moment at Rocky Neck State Park

Happy Fourth!

Saturday, July 2, 2011

These Little Anxieties

With all of the storms and tornadoes nearby and on the news lately, everyone is a little on edge about the weather. Kids are no exception. We had some bad storms not long ago and the next day on the playground kindergarteners at Ethan's school were gabbing on the swings. "I thought it was a tornado! I was scared!" some were yelling.

Ethan is no exception. I'm starting to realize that he's beginning to express his fears, albeit in his own kind of quirky way.

First, there was the "man on the hill" and the shadow the closet door makes on his ceiling at night. The shadow is pretty easy to get, but the man on the hill apparently has to do with the ball field behind our house, just up a little hill and past a small grove of trees. You can't see it but you can hear the crack of the bat and cheers in the summertime, and see cars through the trees, driving on a dirt path up there. Ethan does not like this. I think because he is so tuned in to sounds, when there is something he can hear but not see, it stresses him out a bit. And sometimes the cheering actually sounds like yelling.

Then, this whole thing about cars smashing. We've never witnessed an accident, but we do drive by this house every day that has this junked, smashed in the front car sitting in its front yard. "Uh oh, the car's broken!" he used to say every day. Around that time I started teaching him about crossing the street. There is NO WAY he will be crossing the street on his own for a VERY long time, but I wanted to introduce the concept about looking both ways, and about how the cars will hit you if you run out there. We've also talked about seat belts, being safe, stopping at red lights so cars don't smash, etc. Sometimes I think I'm just talking. Sometimes I'm sure he doesn't get it, or tunes me out, as Anna already likes to do sometimes. But apparently I got the wheels turning.

"If the cars smash, Ethan will be broken," he'll say several times a day, looking out at the unfortunately busy street that we live on. He went on a walk with my mom and kept stopping at every house's driveway. "No, the car is not coming," he'd say. "Be safe!"

He apparently is ready to take weather precautions, too. After hearing me talk during the bad thunderstorm, he's made up a little song and will sometimes sing it if he's pondering the threat of another storm. "If you get scared to (of) the thunder and lightning, you can go to the basement!" he sings, quite melodically, if I do say so.

He told me he's afraid of the sound our kitchen sink handle has been making lately...that he doesn't like the sound of the velcro on a diaper...and that he didn't like the sound of a certain type of fireworks we were watching on YouTube ("Why do they sound tangled?" he asked, whatever THAT means).

Sometimes he's not only scared, he's MAD. "No! I can't go in the library! There's people in there!" he shouted the other day, dropping to the ground while I held his hand -- as if "people" were a swarm of killer bees.

"Ethan," I've been telling him again and again. "It's okay. You don't have to be scared all of the time. You can ask God for help. God doesn't want you to live afraid." I felt as if I were reminding myself, as if I were echoing words spoken across the generations. Anxiety has been big in our family, going back to numbers of ancestors.

In some ways I feel bad that my son is fighting so many fears. But there is another part of me that is profoundly grateful he is beginning to express what's going on in his mind. He's cracking open the window and letting the rest of us see (and hear, and sometimes even smell) the way he does. I know the frustration of so many parents and caregivers who are left wondering, struggling, desperately trying to figure out the fears assuaging their child with ASD. I pray for them, that God will give them the wisdom they may not be able to attain through regular means.

I pray that in some miraculous way, my boy will fight his history and his own internal makeup and adapt a life of not fear and worry but peace and joy. I'm cheering him on every step of the way, fighting alongside him, just as our Father does for each of us.