Tuesday, July 30, 2013

That One Little Word

VBS, Part 2.

I had just picked up Ethan from his classroom. At this VBS he's in the pre-K 4- and 5-year-old class. One of the boys in the class (we'll call him Sammy) lives just two houses down from us.

"How was class?" I asked.

"Good! We learned about baby Moses, and we made a basket like he had." We entered the hallway with the big Garden of Eden mural, all of the colors swirling about around us.

"We made our baskets," Ethan was saying, "and I was making my Moses say 'mama,' and then my friend Sammy pretended that his Moses was the mama, and we played that game over and over until they told us it was time to stop."

I was lost on that word. Friend. My friend.

Ethan had gone into a class of strangers. He hadn't just tolerated it. He hadn't tried to figure out the CD player (a favorite activity in the past). He hadn't retorted back, as he did a few years ago when I tried to push him, that he didn't want to make any friends at VBS.

He'd sat at a table, doing a craft, of all things, and had giggled and goofed around with a friend.

Never mind the parting of the Red Sea or manna from heaven. This is our own little miracle.

Saturday, July 27, 2013

Blowing Horns and Bible Lessons

So, this week the kids had VBS. For the uninitiated, or those who don't "talk Christian," VBS stands for Vacation Bible School, and our church offers it five mornings a week for one week each July. So many churches offer VBS, and our kids have attended several other ones. What's interesting is that the messages the kids learn are the same, but the methods of delivery vary widely.

At our church? VBS means music, dancing, outdoor games, crafts, educational video time, "Bible adventures" where costumed characters act out stories, an occasional fog show, and candy -- lots and lots of candy -- with about 100 or more other kids.

And then there's the darned horn.

This was Anna's fifth year participating in VBS, and Ethan's third (but his first year with the "big kids" rather than preschool). We've come a long way. I think I would have sensory overload after spending a week with that crowd. But as well as he's adjusted, there's always something. I'll call it the "thorn in his side."

"How was VBS?" I asked the first day.

"I liked everything," he answered. "There was only one thing I didn't like. You know what it was? That horn."

Ah, the horn. I'd forgotten about the horn. You know, one of those crazy, ridiculous things you see kids blowing into at parades or fireworks shows, because their parents were insane enough to buy them and apparently wish for constant migraines?

Actually, I've never seen the horn at our VBS, but that's what I picture. At least the way Ethan describes it. Apparently, the horn is what they use to signal to all of the kids that it's time to transition to a different station.

"It was so loud, Mama. I covered my ears." I pictured Ethan in a nervous panic, looking at his watch, wondering when the next horn-blowing transition would occur.

The following morning, at the breakfast table, I was met with resistance.

"Ah, not that VBS AGAIN. I don't want to go!"


"Because they have that horn!"

Yet when we got to the church Ethan eagerly scampered in and started singing the song playing, looking happy as a clam. I considered talking to the teacher about warning him when the horn was coming, but she looked frazzled enough.

A side note: To those adults willing to take a five mornings off during the summer to spend with hordes of hyperactive kids, I say thank you, thank you, thank you. I feel the way about you that I feel about preschool teachers, or daycare workers. I don't know how you do it. I'd need a couple of weeks' vacation to recover.

Each day, things got a little better. One day Ethan told me he wasn't scared of the horn outside, only inside. Then he told me he didn't cover his ears. At one point we were talking about one of the Bible points ("Prayer helps us to stand strong") and I told him he could ask God to help him not be so afraid of the horn.

He may have been distracted a little by the evil horn, but he was listening to the message each day. One evening we were watching a movie with the kids and came to a bit of a scary part and Anna screamed. Anna despises anything even remotely frightening. Ethan looked over at her and said, "Don't worry, Anna. Ask God and He will help you to stand strong and not be afraid."

Yesterday was the last day. Both kids bounded up to me, candy and prizes in hand, going on and on about how much fun they'd had.

"Remember guys," I said. "You have VBS on Monday, too."

"Awwww, noooo," Ethan replied.

"Ethan, it's VBS at Anna's school."

"Oh?? Yea!!" he cheered. I was puzzled. "Why do you like that VBS better?" I asked.

"Mamma, you KNOW why," he said matter-of-factly. "At that VBS they don't have that horn!"

Tuesday, July 23, 2013

Why These Two Little Guys Mean So Much

We were puttering around in the morning when Ethan made his announcement.

"When we go to Target and use our spending money, I want to get Superman and Batman," he told me. Anna had her plans as well, to buy clothes for a less than exorbitant price for her new American Girl doll. Anna has always had plans and definitely feelings about what she wants, desperately needs, or could care less about buying.

Ethan? Not so much. But there we were the next morning, getting ready to go to the store, and he was so excited.

He didn't know it, but so was I.

You have to know. You have to know this is about hope.

This is about your son being two years old and diagnosed with autism, and having no knowledge of autism except its most severe form, and watching commercials with little boys playing with trucks and trains and superheroes and trying not to cry, wondering what the future held.

This is about your son leaving rooms full of toys untouched for months at a time, preferring to swing doors open and closed, and switch lights or fans on and off, on and off.

I used to watch parents of two- or three-year-olds and marvel. While most boys that age not surprisingly do not stay still for long, or sit and listen quietly, I'd notice these boys had a level of focus Ethan did not have. There they'd be, clutching a Matchbox car or Thomas Train in hand, and maybe we'd be waiting somewhere, like to be seated at a restaurant. I'd see these kids sit for a moment, engaged with one toy, perfectly content in their play. I usually had a bag of toys and books and snacks that Ethan would rip through at lightning speed, all while I silently begged for us to quickly get our meal before all of our distractions ran out.

I remember the panic, thinking of taking the kids somewhere like an oil change or to get a tire looked at. With Ethan, there was no way. Bringing a toy (except for more recently, an electronic one) was not going to keep him happy.

And yet -- here we were at the tire place, an hour after getting those two little guys from the toy section, and Ethan was occupying himself by making Superman and Batman fight on top of a stack of Goodyear tires. He's five and a half and this is the first time. These are his very first superheroes.

There's another reason I was almost doing a happy dance in the aisles at Target. Building up a superhero collection means Ethan is also building a repertoire of play possibilities that can only help him as far as getting along with other kids.

What I mean is: if you already have trouble relating to other people, and you don't really like playing that much, it kind of puts a damper on playing with kids your age -- even if you want to.

If Ethan wants to talk about buttons, numbers, or what the hours are at the local stores (his newest interest), that's fine. But, if he actually is showing the desire to play with other kids and only has his old standbys, that presents a challenge. This may not be as much of an issue with some kids on the spectrum (it's a myth that kids with autism don't play at all; most do, they just may play differently) but as I've mentioned before what's surprised everyone is how well Ethan does in certain areas (including relating to others) as opposed to his very limited play skills.

What happens when you start wanting to play but don't have any ideas? I can tell you what happens in Ethan's case. He starts pushing, wrestling, and getting overly mischievous, and as a result actually ends up driving kids away.

But these two little men, the Caped Crusader and Man of Steel? They give him more options. Like discussing Angry Birds or levels in the newest Mario game, they give Ethan ideas, or a starting point for play and communication.

And yes, I feel the need to say, to the invisible Dr. Milanese always whispering over my shoulder: His play with Superman and Batman was, as they say in the autism world, "scripted." He mostly acted out scenes from a game he's been watching Dan play on his phone. I know, I know. And I don't care.

I don't care, because Superman and Batman ate lunch and dinner at the table with us, and stayed clutched in Ethan's hands throughout the evening, then got tucked into bed with him. And for about $10, my little guy is blissfully happy.

Thursday, July 18, 2013

Work of Art

So, we're not exactly artists in our family.

I take that back -- Anna and my mom are both crafty, and both have an uncanny ability to paint and draw flowers.

Aside from that, the rest of us are pretty darned ordinary, when it comes to artistic ability. Some of us are well, downright bad.

I was always the kid who was the last to be finished in art class, begging the teacher to help me because I didn't quite understand what to do. Art was the only special I actually got a C in at one point. That's saying a lot, considering my abilities in phys. ed. (or lack thereof). Dan is far from artsty, but with his engineering background, at least he can envision and design objects in 3-D (the type of projects I stand there staring at because I just don't get what it is).

My dad? Let's just say for the longest time we had a game in our family called simply, "Drawing Contest." The point was to see who's drawing was so bad, it got the biggest laugh. The worst picture won. My dad took top honors, every time we played. He once drew a four-legged duck.

And so we move on to Ethan. Is it any big surprise that sitting and drawing or doing crafts is far from his favorite activity in the world? Every once in awhile, if Anna wants to play school, he will obligingly sit down at the table and follow her instructions for a simple craft. In preschool, his teachers agreed that he seemed to participate in craft and coloring time "under duress."

I remember years ago, watching one of those Desmond Morris documentaries about child development, that explored the way children from all over the world learned to draw in exactly the same way. They showed a fascinating progression of "people" drawings that morphed from big heads and stick feet to a head with torso and arms and legs, and eventually fingers and toes. Every child, from everywhere, learning exactly the same way.

And while apparently this is some sort of "innate" ability, I was glad that this past year in preschool, Ethan's class went over drawing people, step by step. He hasn't exactly gotten much practice. In fact, from the time he could talk until about six months ago, he'd never once initiated taking out a piece of paper and drawing or coloring.

So you can imagine my shock the first day he asked: "Mom, I want to draw a picture."

I was there in a flash, with paper and markers and crayons. I leaned over and watched was he was doing. After a moment, it became apparent. Of course. He was drawing a road. And then he wanted to add signs.

Alas, that is one of the few pictures Ethan has drawn on his own (another involved a skunk and a tree, and another was me. I saved that one on our blackboard for weeks). You see, Ethan's a boy with a mission now, and his mission is to color or paint until every.last.bit. of white paper has disappeared.

"Mom, I want to paint a special picture for you!" Ethan announced the other day. Out came the paints and brushes. A few minutes later, he was all smiles. "Look at what I made for you!" he said proudly, holding up a paper for me to see. Orange paint was smeared everywhere, and dripping off the paper and onto the table. "I made one for daddy, too," he announced, nodding at a similar orange-ish, brown, dripping paper.

"Wow! What is it?" I asked, which was out of habit more than anything. He usually tells me it's a thunderstorm destroying everything. This time, though, he decided to be real rather than humor me.

"It's nothing," he said bluntly. "I needed to fill up all the white parts. Can we hang my picture up now?"

I gently explained we needed to let his picture dry, and he was off to wash his hands.

Looking over at the picture, I had to smile. Yes, this was the type of thing the developmental pediatrician would call a "hallmark of autism;" the lack of creativity, the sameness. And yes, I would love for Ethan to bring me pictures of smiling suns and cars and rainbows and stick people. I think he will. Maybe. After all, maybe he just really doesn't care for art like most of the rest of us.

But there was that excitement in his eyes and his voice. I can't deny that. Dr. Milanese should be here to hear that, too. There was excitement and enthusiasm for trying something new -- and for sharing his creation with his parents.

Maybe he's not creating masterpieces. But what he's showing us is beautiful.

Friday, July 12, 2013

Two Years

We were at a popular swimming area at a local lake for my friend's daughter's birthday party. I stood on the sand under the murky skies and looked out at the water. Anna was in the deeper area, giggling and whispering with a friend. Ethan was making a valiant attempt at actual swimming, fearless, going underwater at times, kicking his feet furiously. I looked a little closer. Not only was he swimming, he was playing. He was "chasing" two girls a little older than he, complete strangers who weren't there for the party.

We'd been here for the same friend's daughter's birthday party two years ago. What a difference those two years can make.

Two years ago, Ethan tolerated the people around him but didn't speak to them. He put up a big stink about being in the group picture, and threw a fit when he had to get out of the water.

This year, at the table: a little boy his age piped up, "What's your name?"

"My name is Ethan," he responded, looking away shyly. I whispered, "Ethan, you can ask him his name."

"What's your name?" he dutifully replied, and the boy told him.

The kids climbed on the rock for a group photo, and Ethan left his swing without too much protest to pose. With me as pitcher, we played "baseball" on the shore with two other boys after everyone was forced out of the water due to thunder. That was the other thing -- I thought for sure there'd be tears when the lifeguards ordered everyone out, and when the continued thunder in the distance meant swimming was essentially done for the day. But apparently pizza, cupcakes, baseball, and swings nearby were enough to hold off a tantrum.

Either that, or Ethan is just learning and maturing.

And then there were the girls in the water. Two years ago, Ethan only wanted to swim by himself and throw pebbles in the water. Of course, sometimes he was throwing these pebbles dangerously close to other people, and I spent a good deal of time constantly nagging him to stop and to be careful.

Now, he was relishing terrifying two little girls as he went after them in the water, again and again.

Later, back home, he confided that the girls had wanted him to stop playing chase.

"They didn't want to play anymore, but I wanted to," he said. "So I kept chasing them."

And with that, I saw that more and more we are moving beyond the stage of not being motivated to interact, to wanting to interact but sometimes not knowing how. This can be confusing; overwhelming...I dare say that at times for Ethan it may end up being heartbreaking.

But in that moment, it just felt like a very good place to be.

Tuesday, July 9, 2013

Suddenly, He's Full of Questions

We may be a year or two late, but Ethan's hit the Phase of Constant Questions, and you know what?

It's really fun. Tiring, mind you, but fun nonetheless. Why do I say that? Maybe because there was a time when all I wanted was for Ethan to answer a simple question, never mind ask one. And maybe also because this is new to us: his sister, who was quite the talker, particularly in her preschool days, was curiously never the type to ask a ton of questions. She would TELL you plenty of things, mind you. But she wasn't the one to trail behind you asking, Why? Why? Why?

Like so many things with Ethan when it comes to his social (not intellectual, or academic development), he's now tackling a phase most kids enter around age 3 or 4. I've always said that curiosity has not been one of his hallmarks. Unlike most typical kids, he has not had an insatiable desire to figure the world out.

Until now.

And so, in the past week alone, I've heard: Why is our kitchen yellow? Why does red mean stop and green mean go? What makes the thunder so loud? Why do people sneeze?  What does "off limits" mean? Why does the air conditioning make things cold? Why do the kitties scratch? ...and the list goes on and on.

This made me think a little about the evolution of question asking, and answering. Back when Ethan first started therapy, one of the first things his Favorite Therapist in the World told me is that so much of communication is linked to motivation. This is why, for many kids, one of the easiest ways to encourage them to request something is to link that request to food (the hungrier they are, the better!).

And so asking questions begins with needs being met. Answering questions usually starts with "yes" or "no" responses to said needs being met (i.e. "Do you want Cheerios?" "Yes!"). But what happens next? I'm no scientist or child development expert, but it seems for us the next stage involved the accumulation of basic information. This is the stage when labeling was big and simple facts, the type that can be memorized and repeated back, reigned supreme. This stage stared with questions like, "What's that?" and progressed to "Where's daddy?" or "When is dinner?" Naturally, this was also the phase when Ethan learned to answer simple What, Where, and When questions ("What is your name?" "How old are you?" "What's that a picture of?"). I should tack Who questions on the list, but with a disclaimer: Ethan has very rarely asked them, although he's much better about answering them. I can count on one hand the number of times he's asked me, "Who is that?" I am guessing this has something to do with his natural inclination to be more interested in objects than people.

That stage went on for about two years. And now (yes!) we have reached the Whys (and sometimes Hows). This has brought my over-analyzing mind to another question (no pun intended): Which comes first, learning to ask the questions or to answer them?

I have no idea if this differs for a typical kid, but in our case, the answer isn't clear-cut. At first Ethan followed most kids in that he started by asking for things to get what he wanted. But then I think he took a slightly different path. Because communication (and question asking and answering) has everything to do with motivation, at times what he knew or could do was not reflected by what he was doing. SO, typically kids might ask What or Who questions first and then start answering them as they accumulate information. Ethan has often preferred to answer rather than ask. He doesn't often pipe in at the dinner table because he still doesn't have that inner drive to prod people to talk about themselves. But -- that doesn't mean he can't.

As for Why questions? It makes sense that kids would ask them long before they can answer them. Half the time, I don't even have good answers to the Why questions he asks. But the funny thing with Ethan is that we'll often catch him trying to do both. So he'll ask something like, "Why does that channel have a big exclamation point on the screen?" and before I can say anything he'll respond, "Oh, I know. Maybe that means the show is all over." Usually his answers are nowhere near correct, but I can see it makes him feel like a little professor, to answer himself.

This is an awful lot to write about something as simple as questions and answers, except that really it's not so simple at all. Again and again, my kids, and Ethan's autism, illuminate so much about the world around us and the different ways we develop. And the best part? As they ask and they learn, so do I.

Thursday, July 4, 2013

The Mystery of Sound

We were pulled up at a gas station, and Ethan had his door cracked open because he loves to watch the numbers as the tank fills up (if only he knew how depressing those numbers are -- darned Connecticut gas prices!). A box truck pulled up and began backing in towards the pumps, making a beeping noise.

"Ow! Ow! Ow! Ow! Ow!" Ethan sang with each beep, perfectly matching the tone of the truck's beeps. He didn't seem upset or stressed, just matter-of-fact.

"Ethan," I asked, getting back into the car. "Are you singing like that because the sound of the truck is bothering you?"

"Yeah," he answered. "Why does it do that?"

One of the things that's been most gratifying over the last year or so is seeing Ethan articulate the way he feels, good or bad, about certain sounds, lights, or textures. We've all heard it said -- behavior is communication. Nine times out of ten, a screaming child on the spectrum is not just being a brat but is bothered -- or overwhelmed, even in a good way -- by a sound or a light or a feeling that is just too much.

Actually for Ethan, he was rarely the screaming type -- instead, he'd "zone out," particularly when it related to sounds. Ethan has what we call superpower hearing. I'm not just saying this. We actually took a little test online that captured what frequencies you can hear, and he scored off the charts...well beyond Anna, never mind me or Dan.

I'd see him in the church nursery, overwhelmed by a new room, and unfamiliar, noisy kids, escaping by lying on the floors and pushing the garage doors on the dollhouse up and down, up and down. He'd make the garage door opening noise again and again; a soothing hum that blocked everything else out.

A teacher a few years ago told me he was seeming to zone out at school sometimes. Gym was one area. Turns out, he was petrified when they'd open or close the huge automatic door they used to divide up the gym. It was too big, too strange. And in class he'd be the one child most startled by the suddenness of the PA system breaking through with an announcement; the slam of a door down the hall; the scream of a child somewhere. And so he'd freeze. His eyes would glaze over and he'd almost look through people sometimes.

But now, thank God, he is able to tell us. And I've noticed that the more he is able to articulate what he actually feels, the less he wordlessly disappears into his own world whenever a sound bothers him.

Ethan has informed me, over the past few months, that he does not like popping bubble gum bubbles, our furnace when it rumbles to life, whining electric saws, radio static, Anna playing her recorder close to him in the car, and our huge ancient fan built into the ceiling in the upstairs hallway that rattles and shakes.

And while we can't always accommodate him (I'm not going to tell people they can't ever blow bubbles around him) we can acknowledge what he's feeling, tell him we're sorry it's bothering him, and try to make it better.

I find it funny that while Ethan is sooo sensitive to certain sounds, some of the traditional ones that would drive other people crazy, he doesn't mind at all. I can't stand the beeping "Don't Walk" signs around town -- he sings along with them. A nails on the chalkboard moment has never bothered him. And when we were riding the subways in Boston, he had no problem at all with the high pitched screeches of the trains' brakes.

It's all part of the mystery of who he is, I guess. But thankfully, as he begins to tell us more and more, we have a better opportunity to crack open a window, and really see inside him.