Thursday, July 31, 2014

Autism and Sarcasm Don't Mix

We had been in a stand-off of sorts, Ethan and I.

He didn't want to go to a second round of VBS at Anna's school. I, in all honesty, really needed him to, as I had a ton of freelance projects to work on throughout the week and knew I wouldn't be able to spend the time with him I would have liked to. Plus, I knew he'd have fun once he got there. He did last year, and the year before. Finally, he relented. He would go.

"I can hardly stand the excitement," he said in a low voice, sitting next to me on the couch, using a line from a Berenstain Bear book we'd been reading. In autism-speak, this is called scripting, and while some people find it very worrisome, I actually think it's one of the coolest things about autism. How many of us can at lightning speed run through all the books/movies/songs we know and find an appropriate line to match any given moment? (Side note: Ethan's coolest script to date had to be when Anna caught him quoting Olaf the snowman from Frozen while playing his favorite hot and cold hose game on the patio, mixing the cold hose water with the hot deck to make it warm --"The hot and cold are so intense! Put them together it just makes sense!").

In this case, I wondered if he was trying to tell me he didn't want to do VBS because it was too overwhelming, hence not being able to "stand the excitement," but before I could ask him to elaborate he asked me, "What does that mean? Why does Brother Bear say that?"

I thought back to the story. The bear cubs have been watching too much TV, so it gets banned for a week, and one night the family plans on going outside to look at the stars instead of being perched in front of the television. The cubs aren't exactly thrilled, and Brother Bear says, "I can hardly stand the excitement." Sarcasm. Great. I took the plunge.

"Hey Ethe," I said, "when Brother Bear said that, he actually didn't really mean it. He was being sarcastic. Do you know what that means?"

Of course he did not.

"It means you say something but you really mean the opposite. It all depends on the tone of voice you use."

Ethan looked at me, befuddled.

"So if I said we're going to the doctor, and you didn't really want to go, you might say, 'Yay, I'm so excited,' but it would be in a grumpy kind of voice instead of a happy one, and that would mean you really weren't excited."

"But why?" Ethan was asking.

"Well..." I was stumped; flailing. I remembered someone when I was a kid used to say, "Sarcasm in the lowest form of humor." Why did we so often take the sarcastic route? Why not just say what we mean and mean what we say?

"I don't know," I replied, feeling foolish and a little small. I was not going to teach my literal guy how to say the opposite of what he really meant. Whoever had come up with that saying was right. Sarcasm was weak; a cheap way out of saying how we really feel. Same for those tiresome eye rolls that usually accompanied it.

In the end, Ethan did have a blast at VBS (basketball, soccer, and monkey bars are all it takes to make him a happy camper). And he was able to stand the excitement. If he hadn't been able to, I'm glad he would tell me straight out, without any language games. Like Olaf says: It just makes sense.

Monday, July 28, 2014

Why I Turned the TV Off

Last week I flipped on CNN for a few minutes after hearing the horrific news about the downing of Malaysian Airlines Flight 17 in Ukraine. Ethan walked into the room just as they were showing images of a smoking field and pieces of debris. His eyes grew wide. "Was that an airplane?" he asked. He then wanted to know if things like that happened here, close to home.

I sat there watching the terror in his eyes and knew I had an opportunity to right a wrong. "We work really hard to stop things like that from happening in this country," I said with confidence, referring to the missile. "We have lots of people who catch the bad guys." There was no need to reference 9/11, of which he is still oblivious. I grabbed the clicker and turned off the TV, and Ethan headed outside to play the carefree games of a child who shouldn't have to carry the weight of the world on his shoulders.

When I was Ethan's age, I was a shy little girl with a big imagination. Highly sensitive and prone to fear and worry, I spent a lot of time with one of my favorite people, my grandmother who lived up the street, who was also prone to fear and worry. And then when I was just a shade older than Ethan, I discovered something her in house that would help feed my fears and my imagination for years and years to come: her Guideposts collection.

Don't laugh.

For those of you who don't know, Guideposts is a little magazine (still in existence today) filled with inspirational stories about people overcoming adversity. The magazine is faith-based and the whole theme is supposed to be how people's Christian faith carried them through trials or tragedy. Somehow, however, I missed that message, when I first crept into Nonna's closet off the dining room and discovered the shelves lined with every issue of Guideposts from about 1976 through the mid-80s.

When I look at this --

The issue from 1979 featured a story from Sue Monk Kidd, who went on to write, among others, "The Secret Life of Bees." 

I immediately smell the faint scent of mothballs and the cool of the linoleum floor where I used to sit for hours on end, camped out, reading, eyes wide. There was the story of the two-year-old who fell out of the window and into a coma. The woman whose twin sons had died at birth. The wildfire that devoured a home and the tornado that killed a woman's elderly mother as the two huddled from the storm in a bathtub.

I remember them all, thirty years later: the story by John Walsh (who would go on to star in "America's Most Wanted") about the abduction and murder of his young son. The first-hand account from someone on that plane that crashed into the Potomac River in D.C. The man who hung dangling from a wire for hours high above the ground before he was rescued, and the family stranded in a blizzard. I will never, ever forget the woman who raced to the hospital to tell her dying father she was sorry for everything, only to get there too late. Or the mother who somehow, impossibly, lost three of her four children to a rare genetic disease when they were teenagers.

"Oh, it's so nice that she's enjoying reading so much," people in my family would say. Only they didn't know I wasn't just reading. I was gathering proof for why the world really was a horrible and scary place.

If you've read this magazine, maybe you're chuckling. Those stories are all so uplifting, you might say. The tragedy isn't the point; it's that God helped them through the tragedy.

True, yes. But I've found that so much of life is not about what is but about how we choose to see things.

After years and years of reading Guideposts I had an arsenal of memories stored up; a catalog of worst-case scenarios. Driving in a blinding storm? What if something happened like that family, the one stranded for days? A high fever might be first sign of terrible disease. If you climb on a plane, you could end up in a river, or worse. If someone's late, they must have been in an accident. It doesn't matter that these things are not likely. They are possible.

Years later I would learn from a mental health professional that this type of thinking actually has a name: catastrophizing. When you've learned to catastrophize (as with all worry, really), it's as if your mind has created well-worn paths to tread down. Undoing them is difficult. But not impossible.

On a side note, I never realized it, but I'm guessing catastrophizing runs in my family. Never was this more apparent than a couple of years ago, when my parents called me in a panic. They'd seen thousands of people streaming across the bridges away from Hartford while driving by, and the first thing they wondered is if there'd been some kind of terrorist attack. Turns out, it was just people heading out after the fireworks, a week after the 4th of July.

Stepping away from a "sky is falling" mentality" starts with guarding your mind; guarding your heart. With not feeding the monster. What I've found (and I often fail at) is there are very many things I have to avoid. News stories about freak accidents. Non-stop coverage of plane crashes. Blogs shared online about dying mothers, dying children. Watching the news or old episodes of ER right before bed.

I will never forget, on 9/11. I sat there after work, glued to the TV, to images of the towers falling again and again. Only: then our cable went out, and stayed out for the next four days. No one else was affected, not even the other tenants in our three-family home. I've always wondered if the TV going black was the grace of God, to keep me from emblazoning my mind with nightmarish images.

And so, when Ethan's eyes got big that afternoon, when he became mesmerized by the disaster and wanted to know more, I did what I should have done decades ago.


Reassure him that most likely, something like that is not going to happen.

Send him to play, as every child should, instead of staring at the screen, digesting too much horror.

Pray that the cycle of fear that so wants to get its tentacles into each one of us, stops right here.

Wednesday, July 23, 2014

Group Think

So, Ethan's doing a social skills group this summer.

I'm not completely on board with the whole thing. First, the group is at the worst possible time of day (dinnertime) on the other side of Hartford (read: rush hour traffic). From the start I knew he'd have to miss at least three of the sessions due to vacation. So why'd we move ahead? I don't know. Maybe it was watching Ethan interacting with the neighbors the past month and being reminded there are so many things that just don't come naturally to him. Or maybe it was remembering that he's so good at committing certain social rules to memory, once he's learned them.

So we're back over in Glastonbury, which is interestingly the very first place Ethan ever had therapy. I can't believe it's going on five years. I'll see him in the same spot where he used to insist on playing with a certain toy, and then tantrum when he was supposed to head in for occupational therapy, and feel like that was a long, long time ago.

Watching Ethan and the other two kids in the group is telling. A person off the street might miss it. They all come in and sit down to play at the same toy (it's four-sided, and has pieces you move along paths) very nicely. The thing is, they each play with a certain part without interacting with the others, at least at first.

The other two kids in the group, a boy and a girl, are a year or two older than Ethan, which is good. This is the first time he's been put with kids who can be a bit of an example. At the same time, Ethan can hold his own with them. When I watch him walk back with the speech pathologist, I feel simultaneously proud of him and a little guilty. I wonder if we should just let him have summer. The group is kind of a pain for all of us, and when he comes out an hour later, he looks like he just wants to go home and stop working.

Another reason I was kind of on board with doing the group is because I thought this certain office was big on using the Social Thinking curriculum. This is a method of teaching I don't know a whole lot about, but I do know that it's very much about not just memorizing rules, but delving deeper and helping kids understand why they should do certain things.

Which is why when I looked over his summary paper from the session the other day, I felt a little bothered. They were talking about boundaries and giving people personal space, which is a good thing. But the whole impetus for why we should give people space and have boundaries was summed up as, "So people don't have weird thoughts about us."


I read the words on the paper, and all I could think about was this creepy training film Dan and I saw from back in the fifties. I think it was something they played in schools. It was all about how one should dress and groom themselves, so as to fit in and yes, basically, conform.

Society spends a whole lot of time trying to convince kids it's okay to be themselves, to be different, to not go along with the crowd. And yet we're telling our kids on the spectrum they must follow a certain set of rules because they don't want people to think they're weird?

News flash: it's too late for that. And honestly, who isn't a little bit weird? I'm a (not quite typical) conservative Christian in a very liberal part of the country. I'm sure people think plenty of weird thoughts about me.

I would much prefer, if we're going to give reasons for why we treat people the way we do, that we take a more "old fashioned" approach. Why not just talk about boundaries in terms of, we don't do certain things because it makes people uncomfortable or feel bad, and when we interact with people we need to care about them and treat them the way they would like to be treated, even if we don't understand it?

I was ready to throw in the towel about the class, but then the other night, tucking Ethan into bed, as we were talking about planets and space, suddenly he asked, "What IS personal space? And we got chatting about what they'd been doing in group. He told me about everyone having an invisible bubble, and when we get too close, we pop it. I could tell he liked the image. I leaned close to say something and he growled, "You popped my bubble."

He's learning something. I just want to make sure he's learning the right things. And I want the wisdom to know when the benefit of a group like this outweighs the hassle, or is worth interrupting good old-fashioned free summer time. It's a never-ending quest to get it right. Sometimes, we fail. Right now, the jury's still out. So next Monday we'll hop in the car before 5, fight traffic, and not eat dinner until 7:30. And I'll hope that it's not all so Ethan can begin a quest to do everything "right," so people don't think thoughts about him that are weird.

Monday, July 21, 2014

Pint-Sized Engineer

We're at the dentist. Thankfully, both big kids are pretty good about their appointments. Anna went first, and now it's Ethan's turn, and we've all crammed into the room since he didn't want to get his cleaning alone.

Ethan can't just sit down and watch the Disney show on the TV. He sits in the chair and sees wonder. As the hygienist makes the chair go up and then backward, he sits straight up.

"Where's the button you press to make the chair move?" He has to know, so she shows him. A few minutes later, as he's watching TV, he asks, "Is this TV connected to the chair?" The hygienist nods that indeed it is, and of course Ethan needs to sit up, get down and look underneath to see.

Then he wants to know about the light. "Why does it go on when you move it down and off automatically when you move it up?" The hygienist is unfailing patient. She explains about the magnet inside that turns it on and off depending on how the light is moved.

Ethan forgoes spitting into the swishy cup that sucks everything down the tube. The sound is too loud and scary. But he does want a closer look at the electronic toothbrush before she uses it on him. He watches the way it spins. He asks to touch it. He checks to see how that is hooked up as well.

As he's chatting with the dentist ("and I lost something like SEVEN teeth this year!") I marvel at his curiosity. I marvel in part because for a long time Ethan did not ask "why" questions and didn't seem to care about how things worked. He was never the perpetually curious child, and there are still subjects that don't hold his interest at all. Historical items and most animals immediately come to mind.

I also marvel because I see the blossoming of something. I get a glimpse at how flipping light switches, opening and closing doors, and playing with fans can lead to this, a fascination with the way electricity flows, the way mechanisms work. I marvel because this is so far removed from anything I would care about (once in junior high I was accidentally placed in an "occupational education" class instead of band and I couldn't change classes fast enough, when I found out they were starting out talking about circuitry...shudder!).

I think of Ethan following the paths of hoses; the loops of the slinky wires; and extension cords. I think about how in Maine two weeks ago, visiting with my uncle who lives up there, he wanted to know all about his generator and how it worked. For a moment I realize that obsessions, that strange fixations, can sometimes be harnessed into something more, into a career that could be a joy. I'm not sure exactly what that will look like for Ethan. But I can see. We can't just make him like things that don't interest him. He's okay. It's like they learned in VBS last week: "Even if I'm different, God loves me."

Someday, some kid will laugh as Ethan's pointing out the power lines or the fire alarms in the school hallways. I hope and pray he will hold his head up high. There are amazing things going on in that mind. He truly is fearfully and wonderfully made.

Tuesday, July 15, 2014

Geriatric Mom

A few years ago, a friend of mine who was pregnant at age 40 was lamenting that her doctors had labeled her a "geriatric pregnancy." I cringed at the term too, but in the back of my mind thought that there was no way I'd be having a geriatric pregnancy.

As a kid I'd loved having young parents. They'd had me when they were 20, and whenever I'd attended a school event they were almost always the youngest ones there. At the time I'd considered it bonus points, not realizing often they were subtly looked down on, or had assumptions made about them, because of their age.

It didn't help that my dad always talked about the trials of being the youngest and having older parents (his mom had him at 40). They were too tired to play, he was always saying. They acted out of touch. His mom smothered and embarrassed him. In high school I noticed the same trends with a friend who had older parents. She was the youngest and appeared to be an afterthought. Her parents, to me, looked as if they'd be ready to check into a nursing home soon. There is no way I'm going to have kids when I'm old, I remember thinking on numerous occasions.

Funny how life works out, sometimes.

Yes, I'm pushing 40 and have an infant. This thought doesn't always thrill me. I hate the thought of turning 80, God willing, when Chloe is my age now. I'm waiting for the day I show up with her at preschool or kindergarten registration and am the oldest one there. The thought of how far removed her high school experience will be from my own kind of takes my breath away. I wonder how I will avoid being completely out of touch.

But I can't think about these things all of the time. I can't change what is. More than that, I can't fix my gaze on that for too long, when with Chloe we have also been given several new gifts.

With Anna, with the first, there was the rush to every milestone. We probably started her on solids too early just because we really wanted to see her reaction to them. When she's going to start crawling? When's she going to be old enough to go to the children's museum? When's she going to talk? The camera was always out, the baby book ready.

At the same time, with both of the older kids, every negative phase was a disaster. Ethan's poor sleeping habits had me pouring through books, drafting schedules on the computer and not leaving the house for days at a time to try to get him on track. I burst into tears about Anna's potty training woes at a mom's group, even while a rational part of my brain knew that the girl wouldn't be wearing diapers to college.

Add to that the tension about Ethan hitting certain milestones late, and I would sum up the kids' infant years as being a huge mixture of fun, tiring, busy, and stressful. Which maybe sounds like most families. But there's another word I need to add: quick. This is, of course, what you don't see when you're in the middle of it all. "The days are long but the years are short," they say, but still that's a point easier understood looking in the rearview mirror.

Chloe helps me see that I did learn something, these past 10 years, and maybe if I'm wise, I will put it into practice. The words patience...grace...peace...and presence come to mind.

She's almost six months and we have yet to feed her anything from a spoon, because I know...there's no rush.

She's trying to get up on her knees and scooch herself around, and for the first time, while excited for her, a little part of me says slow down, little one.

She still doesn't often sleep all the way through the night, and through blurry eyes in the morning I can choose, instead of tensing up, to say let it go...this too shall pass.

I can marvel at every little stage she reaches, knowing that each milestone is not something to be checked off, but a gift. I am better able to keep that sense of wonder.

Best of all, as a "geriatric mom," I'm learning to be present. As someone who usually has half my mind rehashing the past and the other half planning the future, this hasn't come naturally. But when I see Chloe exploring a toy, or I hear her babbling voice in the morning, suddenly, it's easier. This will fly by in an instant, a voice says. Remember this. And so, for a bit longer, I linger right where I am.

There are days already when I'm doing something at Ethan's school and I'll see another parent or two who look impossibly young. They can't be more than 25, I'll think, and have to stop myself before I become one of those people who used to look down their noses at my parents. Those moments reflect insecurity on my part. But now I know: there are true benefits to being an older parent. I'm thankful for the lessons that only now, at this stage, I am able to learn.

Friday, July 4, 2014

Words and Rules

From my spot in the shade at Welch Pool, I can hear Ethan's voice as his swimming class goes to the back of the pool area to grab life jackets. They're right near the little wading pool, which is not functioning and filled with water that is a nasty shade of green. "That's not a kiddie pool, it's a baby pool," I hear Ethan correcting another boy. The sign outside is clear: "Baby Pool."

"Well, you can call it a kiddie pool too," the other boy mumbles grouchily. Ethan pays no attention.

I've written often about Ethan's need to be exact, about the literal way he interprets, well, just about everything. Lately I've decided to gently work with him on that. Gray-area thinking is an invaluable skill. So is the ability to recognize nuances in language.

Outside on our back deck, I've been getting lectured lately. We've dragged Chloe's exersaucer there so she can play to her heart's content in the cool of the evening.

"Mamma, you broke the rules," Ethan keeps telling me. "It says Do Not Put Near Steps." I'd never even noticed a warning sticker or fine print. So we had a little conversation about how near to the steps it would have to be to actually be dangerous, and the fact that there is no way Chloe can heave the monstrosity several feet forward to the edge and tip over the deck with her little five-month-old legs.

We've talked about thunderstorms (always a concern with Ethan). He hears the weather report and panics...even if they say something like "a 30 percent chance." We talked about how a small number means a small chance, and a number closer to 100 means it's more likely -- BUT, sometimes they may say there's a good chance of storms, and we don't get any.

"Why are the weather people wrong like that?" he asked in disgust, to which I had no answer.

And the time. Yes, the time. This might take a while. Ethan has an understandable habit of telling you exactly what time it is. "It's 7:02," he'll tell you, or 5:59 or 3:31. The other day I glanced at the clock and saw it was 8:03. Ethan was right there, so I called his attention to the time.

"Hey Ethe, I'm going to tell you a little secret about time. If someone asks you what time it is, you know it's okay to say 8:03? But it's also okay to say 'a little after 8, or 'about 8 o'clock.' If you use a word like 'about' or 'around,' it's okay. It's still true."

He listened intently. I decided to take it a step further. "Or sometimes if it's closer to 15 minutes past the hour, or 15 minutes before a new hour, you can say "a quarter of 9 or a quarter after 9."

"No, that would be 25 minutes, not 15," he said, confused. "Like a quarter." Of course, he was thinking about money. I gently corrected him and realized maybe the quarter thing was too complicated for the moment.

Of course since that conversation, the time and estimating issue has come back to burn me. In the past I learned if I didn't want Ethan nagging me about when something was going to happen, I needed to give him an exact time, rather than just a vague "in a little while." Except now, if I tell Ethan breakfast is going to be at, say, 7:15am, he's started coming to me at 7:10 and announcing, "Time for breakfast! You said 7:15 and it's close enough!"


Back at the pool after Ethan's lesson, we walked by the slimy abyss that was the wading pool. "This boy said this was a kiddie pool, but I told him it was a baby pool," he announced proudly. "See that sign right there? It says Baby Pool."

"You know what, Ethe? It is a baby pool. But you can say kiddie pool too. That's just another name for it," I replied. I thought about the infinite number of scenarios in which there are interchangeable words for the same item. My head spun a little. One thing at a time.

"Okay," he said. I'm pretty sure his brain will file this away for future use. One down, thousands to go. We'll get there. Somehow, we'll get there.

Tuesday, July 1, 2014

Why I Love My Neighbors

I peek out the screen door after hearing voices. I see them out on the lawn, next door. Ethan's playing soccer with "Mr. John." Mr. John, Ethan has informed me, is 79 years old. In a different time, before we moved into this house, he was a police officer. In the past 10 years, he's always been there: to offer a garden tool; help build our swing set; dig out our driveway after fierce storms when our snow blower died; feed us power when an outage affected our house but not theirs.

And now, on this day, he plays with Ethan. He listens to Ethan's non-stop banter. He patiently endures the interruption to his backyard puttering -- despite my efforts, if Ethan sees him out there, he starts chatting with him.

Our neighbors on the other side are similarly kind. One day "Mr. Mohammed" called the kids over to see a bird's nest in his front yard tree. Several times he's included Ethan in baseball or soccer practice next door with his sons. During a huge gathering one Saturday they invited Ethan along to the baseball field over the hill to join in a family baseball game. They understand Ethan's sometimes obsessiveness about coming over to play (the mom is a special needs teacher). They let him be.

There are so many times I look next door to my left and my right, and I think, if only they knew. I don't think I can ever convey just how much every simple act of kindness means.

Before we moved into our current home, coming up on 11 years ago now, we lived on the second floor of a three-family house. The inhabitant above us wasn't so bad. She just had a penchant for blasting Elton John's "Rocket Man" at interesting hours, and when a boyfriend moved in the sweet smell of marijuana began wafting through our own vents, but our interactions were at least, well, civilized.

Our downstairs neighbors. Well. We should have known something was up when, before moving in, our landlord told us rather cryptically, "I like to refer to them as 'The Police.' They keep on top off things."

Within a week of moving in, The Police had decided they hated us. I never quite figured out why. I don't say this facetiously -- I do believe mental health issues may have been involved. It's an interesting feeling, being completely ignored when you say "hi." Even more peculiar was their Ford Taurus station wagon that beeped and electronically announced "This car is backing up" over and over whenever they backed out of the driveway. Right below our bedroom window.

When it snowed they allowed the 3rd floor woman to park in the driveway with them, but not us. As we dug our cars out from massive snowstorms, they would shovel the front steps -- only halfway, in front of their door, not ours. They knocked on our door to demand why I had left the light on in the basement (simple mistake!). Then there were the accusations that we were "walking around with one shoe on and one shoe off" just to bother them, or taking a bath at the same time they were to wreak havoc with the water, and looking down on them because they didn't go to college (Whaaat? They didn't talk to us -- how would we even know?).

Then there was the giant CB radio antennae "Mr. Police" attached to a tree right outside our back bedroom window (they day I looked out and saw his face staring back at me from the tree almost sent me into a dead faint). His radio somehow created interference with our TV sound system, and at random times we'd be watching a show and suddenly hear his voice cut into the room. He wasn't very nice to the truckers, either.

The clincher was probably the night a police officer beamed a flashlight through our kitchen window after midnight. He said he'd been called about us disturbing the neighbors and making noise. The "disturbance" was Dan dropping his laptop cord on the floor as we were packing to head to Maine the next day.

We tried mediation with the landlord and a "life counselor." We tried baking them pies and bringing them plants. Their distaste for us remained palpable. I can only imagine how things would have gone if we'd had kids at the time, if we'd had an Ethan who liked to throw balls that get stuck in trees and jump off his bed onto the floor again and again.

So yes, this is what we were accustomed to when we moved into our current home. I would have been happy, I would have been grateful for simply people next door who exchanged pleasantries; who lent us an egg now and then. But this? This is an overflowing blessing.

When I take a peek out the back door and see, I remember "The Police" and can do nothing but smile. I realize as we all do at times that no gift is so sweet as the one that comes after hardship. On those long days when nothing seems to be going right, when I feel as if my mom tank is empty and maybe I don't have what my boy needs at that second, I catch a glimpse and thank God for those moments that pick us up, that come right when we need them. Like neighbors who look at my boy with kindness and acceptance, who play catch on the grass on cool summer evenings. Who love.