Compassion

Sam cried last night.

A big cry. A sobbing cry. A lean on my shoulders and weep cry.

Jill and I, out of shock, held his little shaking body, one of us on each side, and let him get it all out.

He was careful not to make a lot of noise. There was an audience, so to speak. And he is not a fan of crowds. He didn’t want anyone to look his way. He didn’t want any comments or condolences or “Are you okay?”s.

Jill and I both know this; and that’s why we circled him, making a shield to block out the world, until he had finished. And he did, almost as quickly as he had started, maybe five-ten minutes, he stopped.

Jill and I both had tears in our eyes. We had been smiling, singing “Amazing Grace,” feeling an undeniable power of togetherness with the room. It was a sorrowful occasion; but I know my tears were because Sam had such a strong reaction.  I’m almost positive Jill’s were, too.

You see, Jill and I aren’t much for crying at funerals. Truth be known, we’re such sensitive souls, we do most of our crying before. By the time we celebrate the life, we’re all cried out.

Jill will cry at a sunset. She’ll cry at a lady bug left in the cold. She’ll cry if a movie takes a sad turn, a song on the radio that reminds her of anyone not in the room, a harsh word casually slung anyone’s way. She’ll cry thinking that someone is hurting, not even knowing for sure. She has a sensitive soul.

I do most of my crying at night, when I’m alone. The world is so much more complicated as we get older. I save my tears for solitude; and my children rarely see me shed them.

But Sam, Sam never cries out of sadness. I didn’t think he really, truly knew what it was. He will cry out of frustration, anger, pain; but sadness has always eluded him.

When I pulled the children together earlier in the week and told them that Jason Kennard had died, Jill immediately began to fight back crocodile tears. She didn’t know Jason well; but she knows his children. She knows her Uncle Paul will hurt. She knows her Aunt Melinda will cry. She knows Mrs. Sue has already lost her husband, and now her son.

But Sam, Sam sat still, staring at his little hands. There was no emotional response really. He asked questions. “What happened?” “Did he suffer?” “When will we go to their house with food?” - a southern tradition. But he didn’t have any tears to give.

So, why did he cry?

Compassion.

As they lead the body from the sanctuary at Fairview Baptist, Sam burst into tears. I assumed he was relating to the finality of it. The fact Jason’s body would be loaded into the back of a hearse and driven to the cemetery the next day. That it was the end of a life well-lived.

But when we made it to the car and I started to console a now perfectly composed Sam, I realized I was wrong.

“Jason wasn’t in the coffin, Mom. Why would I cry over a body?”

“Oh, I just assumed. Well then, why did you cry, Sam?”

“I cried for Seth. I cried when I saw him leaving. I started to think about how he must feel, losing his dad. How he must feel being the only one up there that’s just a kid. Zach’s in college and Whitney’s going to the Air Force; but Seth, even though he looks like an adult, he’s still just a child. A child like me. And if something happened to you, I…well, I would feel horrible.”

Compassion.

If you know anything about Aspies, you know they aren’t supposed to have any. Their mechanical nature and inability to feel empathy make them robotic, incapable of relating, uncompassionate; but there it was. Tears, imagining how it must feel, relating. It was a milestone. It was human. It was amazing.

Part of Who You Are

Sam stares out the window in the backseat. We’re on our way to the doctor’s office; and even with the dial set to his favorite radio station, Sam is quieter than usual. I decide to blame it on a long day at school or a cloud design in the sky or the repetitious blink blink blink of the yellow line in the center of the road. It could be any of these things. But it’s not.

“Mom?”

“Yes, honey.”

“Don’t let them take my Asperger’s away.”

What did he say? “I’m sorry, honey. I couldn’t hear you. What was that?”

“Don’t let them take my Asperger’s away, Mom.” He’s looking at me now in the rear view mirror, close to panic – I can tell. “I like being me. I like being different and smart and funny.”

Biting back tears, “Don’t worry, honey, no one will ever do that. It’s part of who you are.”

“Good.” He smiles, relaxes.

As a parent, the weight of my response is heavy – “No one will ever do that. It’s part of who you are.” Reassuring a child that something - that makes him an oddity, a target for bullying, unable to socialize, highly anxious, all these things - will be with him forever, it breaks my heart. To have him understand that this same something makes him “different and smart and funny” and to be afraid to have it “taken away,” makes me proud.

All we can ask for as a parent for any of our children is that they see themselves as worthy, beautiful, wonderful people. Knowing that Sam does, makes me the happiest mom in the world.

This happened exactly a year ago. Struggles at school made it necessary to reevaluate Sam’s medications, to try and find something that would help him focus and not be so anxious. He was terrified that it would make him a different person. That it would “take away his Asperger’s,” something he identified with, understood and had grown to love about himself.

A year later, we still struggle from time to time; but no new medication changes are necessary for the first start of a school year ever. Sam has found a cocktail that works well and a sense of being that makes him a happy, different, smart, funny child. He’s enrolled in a school with an amazing administration and staff that foster his well-being every day, making him proud of whom he is. I have a fantastic daughter, boyfriend, sister, and extended family and friends that embrace his uniqueness and strive to learn more about what makes him tick. Sam and I are blessed.

I thought of this today as I corresponded with another ASD mom, struggling with the first of the school year blues. It was an eye-opener to remember that we are a community with more in common than a child’s diagnosis. My wish - for her, her son, Sam, for all of us – is that one day autism will be understood, embraced and accepted – by those on the spectrum, as well as the global community. When we can see it as a positive, like Sam does, rather than a negative; the world will become a much more diversified and fascinating place to co-exist.

Balance

Sam bounces – just out of his seat, bent knees, hands clinched in perfect 90 degree angles from his waist. One, two, three, the yellow glow shoots upward; and then – BANG - fireworks. Sam abruptly sits to watch the explosion; and then he’s up again, bouncing as the next ember makes its way through the night sky at Smokies Stadium.

He has absolutely no idea he’s bouncing; and if anyone dared to point it out, he would be horrified. It’s one of his tics. Sam unknowingly hums, smacks his hand against his thigh, or bounces, when he’s excited or agitated, without even realizing it’s happening.

Even though he is sitting right next to Jill, she doesn’t even look in his direction. Instead, she stares at two teenage boys a few rows up from us who are giggling and hopping, exaggerating Sam’s bounce. She stares until they notice her. She continues to stare after they’ve stopped bouncing, sat down, and have begun looking around on the ground for something – anything. They’re obviously embarrassed that she’s caught them. Then, finally, when she refuses to look away, they get up and move all together.

Then and only then, Jill turns her attention back to the night sky, still not even glancing at Sam as he bobs up and down.

It’s amazing to me that my easy-going, well-liked 7-year-old daughter will stare two teenage boys into submission to protect her brother. She knows that if Sam sees them, he’ll be devastated. If he realizes he’s bouncing, he’ll be humiliated. So, she takes care of it, playing the protector, making sure they quit before he catches on.

Sam will never know what his sister just did for him, what she does for him all the time. But if Jill ever needed back-up, Sam, as backward and antisocial as he is, will become loud, even violent. He’ll defend her if she’s being picked on, threaten to beat people up if they so much as brush against her, and could care less if he gets in trouble as long as she’s okay. Sam is Jill’s number one fan. For Sam, Jill is his best friend – really the only person I’ve ever heard him call a “friend” – and he takes that role very seriously.

The two of them have an unusually close bond and would do anything to make sure the other is happy. The fact that they do it so differently isn’t the unusual thing - after all, they are polar opposites almost 24/7 - it’s the fact they seem to switch roles.

When it comes to defending his sister, quiet Sam makes his presence known - he means business. Out-going Jill is methodical, working quietly to make sure everyone understands Sam is to be treated with respect and compassion.

Sam boisterously shouts, “This is my sister and I love her so don’t mess with us." Jill sits silent and stares, whispers, shakes her head. Other kids, shocked by the quiet disapproval, comply.

And where Sam takes chest-beating pride in the fact that he can be a good big brother; Jill is perfectly content to do her job without accolades.

They become each other, only when they protect. And everything stays in balance.

Practice

The little boy down the street has a new bicycle.

How do I know?

Because, he painstakingly pulled it up the stoop and parked it on our front porch so we couldn’t miss it. Then, he banged on the door non-stop until I opened it.

“I have a new bike,” he beams, grinning from ear to ear. “I got it early for my birthday.”

“I’m going to the Smithsonian,” Sam blurts a little too quickly, no grin really.

Jill, hands on hips, shakes her head, grabs her bicycle helmet, and heads out the door after our neighbor. “It’s a really cool bike,” she offers. But it’s too late, the moment’s gone and he’s just not that excited anymore.

Left alone standing in the foyer, Sam turns to me and asks, “What’d I do?”

I get a lot of “What’d I do?”s at my house. And honestly, Sam didn’t do anything “wrong.” He may have come across like a braggart, a little insensitive; but he didn’t mean to be mean. I know it. Jill knows it. The little boy down the street probably knows it. The only one left in the dark is Sam.

One of the best explanations I’ve ever heard for Asperger’s was a few years ago on NPR. The mother of an aspie called it “the absence of social genes.” Basically, aspies don’t have the natural God-given talent to socially interact.

It’s like with music. A musical virtuoso has that special skill, that ability to sit down at the piano and play it effortlessly, beautifully.

I’m no musical virtuouso. I can practice for years, play for lifetimes, take lessons every afternoon; but odds are the one with the God-given talent, that special ear for music, will still outshine me if we’re ever even allowed to play on the same stage. I can learn to play and play well with time and effort; but my tone-deaf self will never have that extra umph to make me a Mozart.

Sam works everyday to learn how to interact with others. He asks questions – “What’d I do?” – because he really wants to know the answer. He wants to know what he could have done differently in that situation. He wants to know how to fit in.

I explain. “The little boy down the street is excited about his new bike; and he wants us to be excited about it, too.”

“But why would I be excited that he got a new bike? It doesn’t matter to me.”

Good point actually. Still. “When good things happen to people around us, we should try to be happy for them.”

Sam thinks about it. “Okay.”

“So, why did you tell him you were going to the Smithsonian?”

Sam smiles. “He told me something neat that happened to him. I told him something neat that was going to happen to me.”

It actually makes sense. Maybe even more sense than the way us neurotypicals respond.

Sam grabs his bicycle helmet, hops on his bike and makes his way over to where the kids are riding.

“It’s a really cool bike,” Sam says, mimicking Jill word for word from earlier.

“You really think so?”

“Yes, It's a good thing. I’m very happy for you.”

Well, at least we’re getting there.

Go - The Duck Pond

I have always made my children "go." Partially because the Bean loves it and definitely because Sparky needs it; but more so, because my entire life that's what I've done - "go." I'm not a big fan of the lazy day.

It's extremely difficult to find a "go" destination that suits both Sam and Jill. You never ask where they want to go because it will inevitably lead to Jill enthusiastically throwing out an idea and Sam providing an in-depth analysis of why that particular place is a bad idea. "Well, yes, that would be fun but..." - just fill in the blank. Parks are unsanitary. Someone might get abducted at a busy festival. Infectious diseases lurk in the spines of library books. So, instead, I decide where and we "go."

Yesterday, we headed to a duck pond near our home. Although the duck excrement and slime on the water positively disgust Sam, his main focus is fish; and the duck pond has them.

If you've ever spent any time around someone with Asperger's, one of their most endearing traits is to be absolutely fixated on one thing. By fixated, I mean that Sam can tell you ever detail about fish. Big ones. Small ones. Extinct ones. Or in his case, ones other people believe are extinct. (The ocean is a big place. There is a megalodon still lurking out there somewhere!)

He can interject fish into any conversation. Go ahead, try talking about brussel sprouts. There is some fish out there that finds them appetizing or smells like them or has a similar sounding name. No matter how hard you try, the conversation will turn to fish. But I digress.

So, I turned the two of them loose with a bag of stale popcorn. The amazing thing is the way the two of them handle the situation, even this relatively mundane one, so differently.

Jill heads to the creek behind the pond where the misfit ducks spend their time. These are strange combinations of mallard and goose, ducks with one leg or just the shy ducks that don't like to battle it out with the million other ducks that have taken over the main pond. There are a handful of other kids her age hanging about. This creek fascinates kids because the ducks are so unusual and less aggressive. Jill immediately begins to hand out fistfuls of popcorn to everyone so they can all feed the ducks together. By the time we leave, everyone will know her name.

Jill throws the popcorn generously in giant rainbow arcs, singing quietly. When she spies me filming her with the video camera, she starts to do the disco duck and waves the bag of popcorn over her head like a lasso. Everyone smiles at her and starts to clap. She's not embarrassed at all; and before she's finished several other children have broken out in spontaneous dance.

But not Sam. Although his sister has caused a stir at the creek, he is squatting at the lake, intently staring into the slime with one tight fist of popcorn. His toes jut out over the water. This is another of his traits. Without realizing it, he always stands too close to the edge. Unless it's a mountain ledge, I've stopped warning him to step back. It startles him and makes him agitated.

A handful of ducks surround him in a "C," wondering why he doesn't just throw in the popcorn like everyone else. Either he doesn't see them or he's waiting for them to leave, which they do. Then he drops in one piece and watches one small koi rise to the surface and take it. He waits until it disappears; and repeats the process. I imagine he counts in his head or has a natural timer, because the intervals seem exactly the same in length. Jill will go through the rest of the bag of popcorn before he is done with his one handful.

When we leave, Jill and Sam share their experiences with the occassional "oh, and Momma, did you see" mixed in. They both had a wonderful time. Jill talks about her new friends; and tells Sam about the duck with the polka dotted butt. They both giggle. Sam gives Jill a quick lesson in all things koi, where they are from, that koi actually means carp in Japanese and what they prefer to eat.

"Momma, maybe next time we could bring some watermelon or lettuce. Could we Momma?"

Indeed, maybe we will.

I’ll start by explaining a bit about Asperger’s – or better yet, I’ll let an aspie do it for me…

Asperger's: My Life as an Earthbound Alien
http://www.cnn.com/2008/HEALTH/conditions/03/28/autism.essay/index.html

What it’s all about…

This is a blog about my kids, Sam and Jill – aka Sparky and the Bean.

The Bean is your typical girl. She loves to talk on the phone, read trendy mags and hang out with her friends. She gets up early to make sure her hair is just so and her clothes look a-okay. She has a million friends and her circle ever expands. I don’t believe she has ever met a stranger. Sounds like your typical 17-year-old, right? Yeah, me too. However, my daughter is 7.

And then there’s Sparky, the absolute polar opposite of his sister. He prefers video games and reading novellas to hanging with kids his own age. He could care less what he wears to school, as long as it’s the appropriate color of the month. Highly intelligent and a little moody, Sparky is the yang to the Bean’s yin.

And now the kicker. This is a blog about raising an Aspie, highly anti-social and meticulous, and a social butterfly, engaging and spontaneous. Finding the balance and loving them both (and I do more everyday) is a challenge and a blessing.

Welcome to my blog.