Monday, October 28, 2013

It's All About the Rules

People are always talking about how those with autism are "concrete thinkers," the type who see things in black and white. I've never witnessed this in Ethan as much as in the last few months.

When I was a kid, I remember learning by observing. Well, Ethan thankfully does this, with one addition: whatever he learns, he makes into a rule. So, for example, when I told him Big Papi (David Ortiz) won the Red Sox game with a grand slam, the next day he announced, "the only way you can win the game in baseball is if you hit a grand slam."

A few days later, the Red Sox won with a three-run homer, so I made a point of telling him that they had won without a grand slam. He then proclaimed: "the only way you can win is by getting a home run." Which led to a whole new discussion about base hits and driving home guys on base.

Baseball aside, this whole rule thing is throwing Ethan for a loop when it comes to the English language. It's no secret that English is one of the more difficult languages to learn. There's a good reason for that: rules are broken in English all the time. So while Ethan discovers the joy of reading and spelling, of memorizing letter sounds and sight words, he's also quickly realizing that in English, there is rarely such thing as a black and white, hard and fast rule.

It started with "couple" and "few." He wanted to know the difference. A few days later when I told him dinner would be ready in a few minutes, he said, more to himself, "that means three minutes, because a few means three." And I had to tell him that well no, sometimes it doesn't. It's more like it means more than two.

He takes great pride in sounding out words. "Kitty starts with 'c'!" he'll exclaim, and I'll have to tell him it's actually "K."

"But it makes a "k" sound!" he protests, and I have to explain that sometimes more than one letter makes the same sound.

He wants to know why "ks" makes the same sound as "x."
He wants to know why the number one is spelled "o-n-e" when it sounds like it starts with a "w." Never mind the whole fact that there is also the word "won," and that there are many words that sound exactly alike but are spelled differently.
He wants to know why "sky" sounds like it has an "i" in it and "pizza" sounds like it has an "e." The list goes on and on.

Silent e brings Ethan great joy. One day not long ago he out of the blue said, "Hey! Why does the word home have an 'e' in it if you can't hear it?" I thought that would be a great time to pull out one those songs from childhood that makes me smile. You remember this one, from The Electric Company? (Yeah, I'm dating myself.)

http://www.youtube.com/watch?v=EVC9TayQIh8

Since watching the little song about silent e, and talking a bit about it, Ethan has been on a quest to find silent e wherever he looks. So I'll hear out of the blue:

"Mom! House has a silent e!" Or gate. Or like. Or ate. The list goes on and on. Silent e is very soothing to Ethan, I think. It's a pattern he can look for, unlike most of the craziness of the English language.

As I watch his frustration as he attempts to write a word like "friend" and wants to know why in the world there is an "i" in it, I'm seeing our language in a new way. I have a new respect for anyone learning English as a second language. I wonder if at some point Ethan's going to get frustrated at rules that contradict themselves again and again and just use his sheer memorization skills to tackle words. And as always, I am enthralled, watching the way the mind works, the way his mind works.

I attended a writing seminar once where the speaker announced boldly that in your writing you should feel free to "Break any rule. But know why."

Somehow, I have the feeling that will not be Ethan. Ever. Rules are sacred, like the ones in the baseball playbooks, no matter how obscure (a-hem, World Series, Game 3). Come to think of it, that would be an awesome career choice. Ethan would make a very good umpire someday.







Friday, October 25, 2013

Communication, Dissected

So, apparently (like me), baby number 3 likes to wake up way too early. I'll be tossing in bed at the usual 4:30ish each morning, and I'll feel Thump. Thump. Thump.

I read recently (don't ask me how I missed this with the first two kiddos) that babies in utero like it and may actually respond to you rubbing your tummy. So I tried it. Voila! Thump. Rub, rub. A thump back, in the same place. Rub, rub. Thump. Rub. Thump. On numerous days this has gone on for numbers of minutes at a time. It's like a little science experiment. Or our first conversation.

That got me thinking about Floortime (an approach to treating autism that I've been a big fan of). Floortime encourages you to tune in to your child's needs and interests, joining in with them in those interests as a way to help entice your child to interact and engage with you. It's about following your child's lead.

A big part of Floortime involves "opening and closing circles of communication." What does that mean? Essentially, you notice what your child is doing and join in with them (opening a circle). The child notices and responds to your overtures, participating with you and helping the communication to continue (closing the circle). So for example, your child is playing with blocks. You come over and sneakily take one block away. The child notices and reaches up to grab it. That's opening and closing a circle. You give it back and take a different block. The child laughs and sees this is a game. Maybe she gives you another block, or tries to stop you from taking more. These back and forth moments seem so simple, but really, they aren't.

These early morning baby conversations are actually the very first form of opening and closing circles. I notice what she's doing and respond. She responds back.

You don't realize how amazing these types of interactions are until they are missing.

People are always talking about early autism signs, and at times they tend to focus on some of the more stereotypical, obvious things: a lack of speech, hand-flapping, toe-walking. As I began to delve into Floortime and discussions of how children truly develop cognitively and socially, I realized sometimes we look in the wrong places, and sometimes there are underlying issues that manifest in such subtle ways that really have to be looking for them to know they are there.

Ethan was a quiet baby and toddler. Very quiet. And while I don't want anyone who has a baby who seems content to sit back and observe the world to get panicky, I will say this: I've learned that most typical babies, when you work to communicate with them, will start finding a way to "talk" back to you, even if they can't talk. Beyond that, after awhile they will work on discovering ways to get your attention. These are early ways of "opening and closing" those circles of communication.

When I go back and look at videos of my interactions with Ethan when he's little, I notice two things. One is that there are many times when he sees genuinely happy to see me. But I also see that he rarely attempts to talk back. He doesn't do anything to make me turn my head, to look at him, to get my attention. I open circles of communication, and they are left there hanging. This is a red flag that is so subtle most of us would never notice -- especially if our child is giving us big grins.

video

This video was taken when Ethan was about a year old (forgive my annoying voice). It's one of several I took of him from the ages of maybe 10 to 20 months where he is enamored with some-THING, and I use that certain thing to try to spark interaction, but Ethan is clearly more interested in the object. I don't get much response, yet he's not completely ignoring me.

I don't post this to make my son out to be a guinea pig, or to shame him in any way. Looking at stuff like this used to bother me. But now, as I see how far he's come and how much he has learned to compensate for the areas where he has trouble, I'm almost amazed when I watch (plus, if I can be biased, he's pretty darned cute!).

Bottom line:
Maybe you have a child who is behind in speech, but who works very hard with gestures and facial expression to communicate his needs, or to get your attention. Or maybe you have a child who is off the charts in language but rarely responds to what you say or shows pleasure in engaging with you. Which is more of a red flag?

I think more than anything, the intent to communicate is more important than the actual ability, at least very early on. It's closing those circles. Like I do every morning with baby #3. Like many of us do hundreds of times each day, without even realizing.


Tuesday, October 22, 2013

Pajama Day and other Fashion Worries

The other day Ethan got into the car after school, acting a little pouty.

"What's wrong?" I asked.

"We earned all our Brownie Points, and she let us vote for extra recess or Pajama Day, and Pajama Day won!" Ethan was clearly not pleased.

"Oooohhh," I answered. "So you're going to have a special day when you wear pajamas to school?"

"Yeah." He paused for a moment. "Why do we have to do that? I don't want to wear pajamas to school!"

"Why not?"

"I just don't want to. People don't wear pajamas to school."

I knew where this was going. The vote in Room 20 had just rocked his world. People wear clothes to school, not jammies. What was he going to do about that?

I was never big on the school spirit or "special" days at school. I've always been creative, but with words or my thoughts, not fashion. Mismatched Day, Crazy Hair Day, Backwards Day, you name it, I begrudgingly did it, knowing I'd pick something perfunctory that would show I was participating on the most basic level without drawing too much attention to myself.

When Anna started to have these days at school, I noticed she was the same way. She too lacked the spunk; the nerve; the enthusiasm. Like me, Anna has always found these days stressful. In fact, she finds changing anything about her appearance stressful. On her Pajama Day she fretted over which type of pajamas. I'll never forget wanting to put her hair up in preschool, and hearing her protest: "No! People will make comments!"

Somehow these days end up feeling like dressing business-casual in a corporate environment. You know, when dressing down a little is actually more stressful than coming to work on a regular day, because you don't know what is too dressy or too casual?

Or maybe I've just cared too much what other people think, and have sadly passed a little bit of that down to my children?

I'll never forget my cousin's bridal shower, circa 2000. My mom and I both received invitations. The location? A beach in an upscale town on Boston's North Shore. We wondered: what in the world does one wear to a bridal shower at the beach? Was it literally on the beach? (Turns out, it was, under a small pavilion.) How dressy could you get at the beach? But this was a ritzy town. We couldn't show up looking like bums. We ended up literally driving by veeeery slowly, a number of times, attempting to scout out the area and check out what everyone was wearing first, fully prepared to make outfit changes in the back of the minivan. (For the record, I think we wore casual sundresses, and it worked just fine.)

I think of Ethan the other day, before we left for school, when I asked him if he wanted to wear a jacket. "I don't think so," he said. There was a pause, and then, "But what are the other kids wearing?"

This blew me away. At his social skills group they're working on taking another person's perspective. Yet this kid knows enough to wonder what other people are thinking? I'm not sure if this should amaze or sadden me. How strong is that inherent desire in all of us to fit in?...

...which makes me wonder if the worry about Pajama Day is autism-you're-rocking-my-routine-related or I'm-worried-what-the-other-kids-will-think-related. Only his class is doing Pajama Day -- not the other 400-something kids in the school.

The Pajama Day talk continued in the car yesterday.

"So for Pajama Day, I put on my pajamas when I get dressed?"

"Yup."

"Noooo! I just can't do that," Ethan said. "I'm too scared."

"Why are you scared?"

"Oh, you know why I am scared. I just don't want to do that terrible Pajama Day!"

But I'm actually not sure why he is scared. And I'm not completely sure he is, either. His teacher told me he doesn't have to do it. But I'm all for pushing out of the comfort zone, as long as it's not too painful or stressful.

That's why Anna has gone to school with purple (chalk-colored!) hair for Silly Hair Day. It's why I let my mom dress me as "Space Moose," under duress, for Crazy Hat Day when I was in 4th grade (Don't ask. But I won first place.)

And it's why Ethan and I have worked out a compromise. He's going to put on his Angry Bird pajamas today, and he will have clothes with him if he wants to change.

School starts in t-minus 180 minutes....stay tuned.














Friday, October 18, 2013

A Good Problem to Have

There we were, sitting around the table at IEP meeting number 176. Okay, really it was probably only about the 6th or 7th of these meetings we've had, but it felt that way, because they're always the same: positive, friendly staff that I love; fairly good reports on Ethan all around; a principal who I wish would just thaw out a teensy little bit; everyone on their best behavior due to said principal.

I can't complain about these meetings, after the horror stories I've heard. I thankfully am not fighting the school tooth and nail for services. My son is making advances, which puts less pressure on the staff, which means everyone feels pretty good. Thank you God, because if every meeting was like our very first, I don't know what I'd do, besides be an emotional basket-case.

This time around was much the same. I am so stinking proud of my boy, I could burst. He is above average in math and reading. He's just about at DRA level 6, where they're supposed to be at the end of kindergarten. In speech he reached all of his goals except one -- explaining why things are different (i.e. verbal reasoning). In OT, he reached his goals and can write all of his upper and lowercase letters.

The minuses are few: he needs a little extra help to stay on task; he tends to get silly and get in people's faces, poking them, etc.; he still needs his social skills group big time to work on things like emotions and perspective-taking. I would barely call them minuses. They're just, well, Ethan.

For the year ahead, they are going to cut down his speech and OT and make sure he gets the 40 minute, twice-weekly social skills group. His shared paraprofessional, who he barely uses and who the teacher thinks he doesn't really need, is not being reassigned...but, she's no longer going to be working much with Ethan. They're re-writing that into the plan as him requiring "additional adult support when needed."

After all this positive talk, the principal said it. She said what the special ed. teachers have been hinting at for the past few years, and she phrased it in the form of a question.

"I'm wondering after hearing all of this," she said, looking over her paperwork, "why Ethan is even receiving special education services?"

She didn't mean it to be combative; the meeting had been concluded and decisions made. She wasn't arguing to take anything additional away from Ethan. For now. But I can see that the seeds have been planted.

I first heard the words 504 plan a year or two ago, when one of the special ed. teachers said in passing that down the road, that may be all that Ethan needs in school. I'd never heard of it, like so many other terms you don't become acquainted with unless your child has special needs, so I looked it up.

According to Washington.edu:
"The 504 Plan is a plan developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment."

So what does that mean? And how does that differ from special education, or having an IEP (Individual Education Plan)? An IEP is:

"...a plan or program developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services."

The difference?

"...For students with disabilities who do not require specialized instruction but need the assurance that they will receive equal access to public education and services, a document is created to outline their specific accessibility requirements. Students with 504 Plans do not require specialized instruction, but, like the IEP, a 504 Plan should be updated annually to ensure that the student is receiving the most effective accommodations for his/her specific circumstances."

So if I'm understanding this right, and if I heard the other subtle hints the principal kept getting at during the meeting, the question about whether Ethan needs an IEP relates to whether or not he requires specialized instruction. Apparently, that does not mean something like OT. And to my surprise, it apparently doesn't necessarily mean the social skills group, either. One teacher mentioned that being able to be "fit into a 504 plan down the road."

I don't want to get ahead of myself here. Ethan's plan for the next year has been set. But if he continues the way he has been (and that is an "if," because school will become increasingly difficult and complex), he may at some point be discharged from the special education system.

Of course in many respects this is thrilling news. Of course we would be happy about that. Or -- would we? The more I dig around, the more I hear from parents who claim you should do everything possible to keep your child within the special ed. system. Why? I don't understand all of this very well, but I believe it's because the IEP is a legal, binding document, and a 504 is not. Meaning, the school can say they are going to do whatever they say they are going to do to help out your child -- but no one is holding them to it.

I'm not going to think too much about this now. There are too many unknowns. Who knows where Ethan will be a year or two or five from now? Maybe there is a fight for services looming on the horizon. Maybe everything will fall into place. I'm going to educate myself. I will slowly learn and slowly prepare, should a decision like this come our way down the road.

For right now, I'm going to enjoy where we're at. Because in the end, having someone tell you your child is doing too well is actually a very good problem to have.







Thursday, October 17, 2013

The Only Way to Soar

It started in the trees, soaring for the first time scared on a day in September just after Ethan was diagnosed.

It continued in New York, at Lake George, celebrating our anniversary just as we are today, at a ropes adventure course, having a blast although neither Dan nor I could ever be called particularly athletic.

It was fine-tuned, this crazy idea, over the next four years. What started as a fun activity to do together turned into, "What if we opened one of these places ourselves?"

First, we were going to be outside. So we worked for two years with banks and business people and the town planning and zoning, back and forth, back and forth. The one renowned cranky neighbor in town worked harder to NOT have a business next door. We lost. Start over.

Then, just as we weren't sure what to do next, or how to possibly find a new location, new land that wasn't outrageously expensive (this IS Connecticut after all), land that had big trees, no less, a new inspiration came. Why not try this idea indoors?

And so another year of searching, planning, pulling all of the pieces together. Then there was the day we drove into the parking lot of the place that had housed an inflatable bounce house business, and we looked at each other. This could work.

Spring and summer were spent cleaning, peeling, painting, building. We enlisted help from the kids (this sometimes worked better than others). Dan (and often his dad) spent months on construction. This civil/structural engineer, who left a comfortable, well-paying job that had left him little room to grow was now in some respects out of his element, but in other ways using everything he'd ever learned to design and build.

Then last week, after the long weeks and days and months, we opened. Soar Indoors. The area's first indoor ropes adventure and zip line course.

And like any businesspeople, we realized the work continues: to get people here and keep them coming.

Throughout this process, I've learned much.

I've learned it's not just a cliché -- starting a business is incredibly challenging. You can't get discouraged easily. You can't throw in the towel the first time you hear "no." I have a new respect for anyone who's ever started any kind of business on their own.

I've learned that my husband has an incredible, unshakeable ability to not give up, to find a way where there seems to be no way. He's taught me so much about perseverance, or my lack thereof. I'm so proud of him.

I've learned that as a Christian it's very easy to throw around phrases about "trusting God" when you've got a nice paycheck coming regularly, a good health insurance and retirement plan, when you have the emergency fund in the bank and every bill paid ahead of time. I've learned: how dependent am I? How much do I really know about trust and faith?

I've learned that starting a business is sort of like taking that first step on the ropes course itself. I wrote this three years ago, after an adventure on a different course in New York:

At one point we stood on a platform watching someone else on another course gain the confidence to jump onto a trapeze-like swing into a wide rope ladder that they had to grab onto after letting go of the trapeze. "It's all about the illusion of fear," I said to Dan. "That's what these places are all about. There's no real reason to be afraid, because you're always connected." Each person is latched in not once but twice to the wires and can't possibly plunge to the ground, but when you're looking at how far down it is or how difficult it is to balance, it's so easy to forget that.

While I sweat up in the trees on Saturday I realized how similar it was to my walk with God and my walk in life. I thought about how easy it is to become paralyzed by fear when we only look at our circumstances and forget that we have a God that won't ever let us fall. Even in death, he doesn't let us down. I thought about how often we look at obstacles and immediately deem them impossible, not realizing that if we just take one step at a time, no challenge is as daunting as it seems. God never asks us to travel from point A to Z, just A to B, then B to C. And so on. I saw that course as life...full of adventure, pain, stress...moments when we crawl and others where we soar with the wind, unencumbered. We come through changed, battered, weary. Yet when I challenge myself, when I face my fears on the course and do everything I can possibly do and attempt what I think I cannot, when I push myself to the limit and know I've tried my hardest, even if I didn't completely succeed...that is a life well lived. That is the best kind of adventure.

When you launch yourself onto a zip line, you think you have to do something to make yourself go. You don't quite know how to make yourself move. It's only when you get down into the position of sitting, and lean back and let go, that the line takes you.

The only way to soar is to let go. This is never as easy at it sounds. Sometimes, I think it's a lifelong process.

We're off on our ride. Maybe you'll come see us sometime?





Monday, October 14, 2013

Why Sports Matter (Sometimes)

I was talking to our worship leader at church yesterday, actually about my blog post on being naturally pessimistic and Ethan picking up on that. He wondered aloud if some of that pessimism is actually a New England thing, because (being originally from Houston), he's noticed there seems to be more of it around this area.

I jokingly told him that's why when the Red Sox won the World Series, it was such a big deal. Generations of negative mindsets, of always expecting the worst and not knowing how to hope, were blown up and transformed.

Then I went home later that afternoon and turned on the TV.

Ethan is my sports buddy in the house. Dan watches under protest and Anna's bored to tears by baseball and football (the only two sports I really care for), but Ethan likes sports, primarily because they involve numbers, clocks, winners, losers, and of course, the chance for more screen time.

I was raised on the Red Sox and Patriots in central Massachusetts. Now that we've been near Hartford the past decade, there is none of that "rooting for NY teams because it's not THAT far away." We're still in Connecticut, people, which is indeed, believe it or not, a part of New England. Okay, rant done. Moving on...

So yesterday Ethan and I watched part of the Patriots game together, and it was one of those games worth turning in for: constant shifts in momentum; great plays; missed opportunities. The clock was ticking, though, and towards the end game it became apparent that the Patriots had squandered an opportunity to score a touchdown and were most likely going to lose the game. "Ethan," I said gently. I thought it would be better to warn him. "I think the Patriots aren't going to win."

That's when Ethan's tears started.

First there was a trickle and a sniffle, and with three minutes left to go in the game he was all-out sobbing -- you know, those shuddery sobs when your kid is crying hard and trying to talk at the same time and is probably overtired so everything in life seems worse than it really is?

"But...I, I, really want the, the Patriots to win!" Sob. Three minutes...five minutes of this while I tried to console him.

Meanwhile, in football time, only a minute had passed, and it looked as if our team might have a chance -- until the ball was intercepted.

"Ethan, I'm going to change the channel. I think the game is over." I randomly switched to a home shopping network on mute, where the hosts were slicing some kind of roast over and over and over.

"No! They have to win! They can still get a touchdown!" In my mind, the other team was going to get the ball back and run out the clock. The last thing I wanted was Ethan screaming louder because the clock was still going but no one was playing anymore in the game. I kept my eyes on the roast. Slice, slice, slice, and tried to remain patient.

"Pleeeeeease!! Patriots!! It's not fair if they don't win. They still have time. They HAVE to win!" Tears, screaming, kicking. My head started pounding, and finally I flipped it back.

"See, there's time!" The joy was back in his voice, accompanied by sniffles. There was a minute left in the game. It goes without saying that Ethan is an avid clock-watcher, including in football games. I half-heartedly glanced at the TV. But what was this? Our team had the ball back. We were marching it down the field, play after play. Still, it couldn't be...

There was 10 seconds left. We had one last chance. "This is it, Ethan," I said with clenched teeth, steeling myself for the screaming to start again. The ball sailed through the air...and landed right in one of the Patriots' receivers' hands -- in the end zone.

No. Way. Game over. WIN. Tears replaced by smiles. Ethan ran to give Dan a full report the moment he walked in the door: "And then they got a touchdown, and then they scored an extra point and the score was 30 to 27!..." and on and on. 

He went to bed happy, and Dan and I sat on the couch exhausted and watched the game 20 miles up the road from Foxboro at Fenway Park, where the Red Sox were playing the Tigers in Game 2 of the ALCS. Our team looked pitiful. And for all of my musings earlier in the day about how things have changed, I didn't have it in me to stay up late and believe for something magical to happen. Not when my team was getting no-hit for the second night in a row and was behind by 5 runs. So naturally, I went to bed. They were done.

Except they weren't. And when I woke up I found out the Red Sox had improbably come back at the end of the game to win.

Two games; two negative expectations; two completely opposite outcomes. And while they were just games, in some ways they weren't.

They served as reminders, as cautionary tales on how easily I give up, how quickly I get discouraged. Not just about ball games. About much bigger things.

They say it's a common trait with autism, but I'm the one that seems to have it: the tendency still to  expect and accept defeat prematurely, to not want to persevere, to throw in the towel and throw my hands in the air in retreat.

Thanks to two unforgettable games in the span of a few hours, I was reminded again to teach my child to have hope and to keep the faith.

And reminded myself, that despite the way things may appear -- as Winston Churchill once said --  never, never, never, never give up.











Wednesday, October 9, 2013

Busted

So lately Ethan's had this saying -- I'll call it a caveat -- he adds on to everything.

He'll be telling me about his day at school, and will tack on: "There's only one problem..."

We didn't get to go on the playground.
Mrs. B. forgot to talk about weather during morning meeting.
Mrs. C. wasn't there in gym today.

We'll be in a store, and he'll chime in, "The only problem is, I can't find the exit sign"...or the fire alarms...or the bathrooms.

I hear this nearly every day, about there being some kind of problem, about there being "bad news." The good things about the day come first, tempered by the bad, by the one thing that sticks out as being out of order, not right, missing. Where did this come from? I wondered, curious. For someone who is at times excessively introspective, I don't know how I have been so thick-headed.

The other day I was talking with Dan and heard it. I don't even remember what we were talking about. I just know those four little words came out of my mouth and the truth hit me like a thunderclap.

There's only one problem...the problem is...

I say it when I talk about my day, brushing over the good to give a gory description of the bad.

I bring it up when planning, quickly finding the reason why something won't work.

I even (how I hate to admit this) go there sometimes when Dan or the kids are helping me out around the house or with chores, and they don't do things the way I would have.

It's never been a secret that I wasn't born an optimist and have never been one of those people with a naturally sunny disposition. But darn, I thought I was working on that. I thought I was getting better. In the past several years I've been making a conscious effort to live with a more thankful attitude.

Yet in this moment I can only think of that anti-drug commercial from the 80's. You know, with the kid yelling at his dad: "YOU, all right? I learned it by watching you!"

Man, it's sobering when our kids parrot us.

I know I can't stay in this place, beating myself up. That would be, you could say, focusing on the problem. We're all works in progress. I'm still a pretty good mom.

But right now for a moment, to borrow from the 80's again, I'm thinking of Ethan and all that comes to mind is: Oh, schmack.

Busted.









Monday, October 7, 2013

Evolution of Hide and Seek

First, when we played inside, he didn't want to hide, just seek. When it was Ethan's turn to hide, he'd just lie on his bed and wait for me to come get him.

Then, he wanted to hide but would usually hide close to plain sight. He just didn't get that I could still see him.

Who knew this one childhood game could take years to master, or serve as an indicator of my child's cognitive development?

Over the past few months, we've hit a new stage with Hide and Seek. I'll call it Ethan Wanting to Hide So That I'll Never Find Him. This, as you may suspect, it not such a good thing. In fact, sometimes it's been downright terrifying.

It started in Maine, playing with cousins. Ethan decided he was going to hide, and for once he hid well. I haven't been used to having to actually find the kid. So when I couldn't for several minutes, I started to get a little panicked. Turns out he was in an old hamper. Thank God while his hiding skills have improved, his originality has not, so when we couldn't find him again a few minutes later, we knew just where he might be. Bingo.

At home, things got worse. One day I assumed Ethan was in the backyard playing. He's at a point now where I feel I can leave him out there to play for short stretches and then check on him through the sliding glass doors in the back. I looked out, and he was gone. I searched the usual places, like the garage or the big tree he likes to climb. Nada. I looked inside. I called him. My heart started pounding...then I found him in an empty green storage bin, lid almost all the way on, that was sitting in our playroom.

I honestly don't think he enjoyed making me scared. But I saw his distinct pleasure in not being found right away. Either one extreme or the other, right? Either he hates hiding or he has to hide in a way where no one kind find him.

The worst time involved the cousins once again, visiting down here this time. We were supposed to go to the park. We were ready to leave, Ethan was there -- and then he wasn't. This time, Dan and my sister-in-law (plus half the kids) all joined in the search. Still no Ethan. I began to wonder for the first time if he would do something crazy, like climb over the hill in back of our house to go to the school playground, or walk in the neighbor's house (he's followed Anna in there before when their great-grandkids were visiting). And of course my darned writer's imagination (never mind the mom in me)started churning up even worse scenarios. A weirdo in a car luring Ethan away with candy. Ethan getting distracted by a storm drain he hadn't investigated and crossing the street to who-knows-where. I wondered what he would do if he were lost. I wondered if we'd given him the skills and if he had the ability to properly communicate. I wondered if we'd have to call the police. All of this, in the 10 to 15 minutes he was nowhere to be seen...

...then my sister-in-law found him, hiding under the dashboard in the front seat of our car.

We've had more incidents since then. The day we announced he was going to have a baby sister (not the baby brother he'd hoped for) I was proactive. Once he ran out of the house saying he "didn't want to live here anymore!" I followed him, figuring if there was ever a moment to actually trigger the kid running away rather than just hiding, this would be it. Thankfully, he was back in his spot in the front seat of the car (and thankfully, he's gotten over his baby sister sadness).

And then there are the days before school when he decides he has to hide. The thing is, he still is working on the hide and seek nuances. He will call to me things like, "Don't look in my room!" when he's hiding in there or, "I'm ready for you to find me!" not realizing that the direction of his voice keys me in to where he's hiding. Then, when I do find him, he gets upset. "I wanted you to NEVER be able to find me!" he protests.

And every time, I reiterate, that we don't want to never be able to find him. That's not the true point of Hide and Seek. In fact, the thought makes me shudder more than a little bit. Especially lately.

Someday, we WILL get Hide and Seek down. As always, I never knew how many steps there were to this thing. As always, I'm more amazed than ever at  the many seemingly insignificant things we master as we learn and grown.



Tuesday, October 1, 2013

Alone

"Ethan, are you going to live in your own house when you grow up?" I asked him the other night.
 "Yeah," he answered slowly. "But maybe it will be right next to THIS house."
 "And what will you do all day? Will you have a job?"
 "Fixing power lines!" he answered, almost silently adding a duh.
"And I will play games on the phone." Of course.
 "Do you think you'll get married? Will you have a wife?" No answer. Then he added -- "Maybe I will live in that house during the day. And then I will come back here at night."
 
I was reading another autism blog not long ago and this mom was mentioning that no one likes to hear when good things are happening, that she gets a lot more comments when she posts about a bad day or frustrating incident with her son.
 
As much as I hate to admit it, I get this. I used to scour people's blogs with an attitude. When they'd write about their kids' achievements and hopeful moments, I wasn't so much rejoicing with them as swallowing a bad taste in my mouth. Discouraged by my own child's diagnosis, I'd think, "What do YOU have to complain about?"
 
And I'm sure this happens with this blog, too, and in those times when I can't help but celebrate what Ethan is up to. There's this weird dynamic where I feel guilty for counting my blessings and guilty for not counting them.
 
There are moments when my breath is taken away...like when my son throws his arms around me and makes up little songs about loving mom, and I know I must stop and relish this moment because there are other parents of children on the spectrum who have not been given this gift.
 
And then there are times, fewer of them right now, but still there, when things still hurt. Despite my son's strides. Despite the fact that I know how far he's come and I know his potential.
 
Many days, I ask Ethan what he does at school and what he does on the playground. The answer about the playground is always the same: "I play by myself." What are the other kids doing? I never get an answer.
 
Last week I asked one of his teacher's about that, a special ed. teacher who runs his social skills group, which will be firing up again this week.
 
"Yeah, he does play alone," she acknowledged. "What can you do? That's how these kids are. I have another little guy a little older than Ethan who's always telling me that, how much he likes playing alone."

She went on to talk to me about how we can't make them want to play with other kids, and that what they can do is work on the social rules, on what's socially acceptable, and I knew what she was saying, and I knew in many ways she was right.

But it didn't stop me from crying behind my sunglasses, in the car driving away.

In that moment, I wasn't thinking about Ethan reading or being far ahead in math, of his skills building marble creations or natural talent in music and on monkey bars. I wasn't even thinking of his hugs and smiles or the fact that he does play with those who are familiar to him, on his own terms.

I just kept seeing recess on the playground in my head, and hordes of yelling, chattering, laughing, chasing kids. And my son on the other side. All alone.

I wondered what that meant, not just for right now, but for his future.

I didn't know which ripped at my heart more: that he was alone, or that he was happy to be alone, that realization that he truly is wired differently, that helpless feeling that I shouldn't want to change him and can't change him.

I knew I couldn't sit there and cry and cry, and the cerebral part of me knew there were so many other things about Ethan I could focus on rather than carrying an imagined playground image in my head.

A verse kept running through my head, that'd I'd been reading: "Praise be to the Lord, to God our savior, who daily bears our burdens" (Psalm 68:19). I knew I couldn't carry this sack over my shoulder on my own. This isn't something that magically disappears. I have to constantly turn it over, again and again and again and again.

My son right now blends in fairly well. He can talk to me. He's mainstreamed; he's learning. But he's still on the spectrum. He's still different.

I have to remember this. I have to remember there are others out there I have judged, with their kids or families with seemingly insignificant issues. Everyone, as the famous quote says, is fighting some kind of battle. Everyone is hurting sometimes.