Walking the Tightrope

“The thing about autism,” my friend said, taking a bite of her salad, “is it looks good until it doesn’t.”

What a brilliant way to put it, I thought to myself. It was the second week of school, and so far, Jack was looking pretty good. Every morning he packed his snack and gathered up his gym clothes and hopped on the bus without a look back. He came home happy and calm, full of exciting details about the day; the way his locker unlocked right away and he ate a sandwich from the cafeteria at lunch.

But within a few days, the wheels began to fall off the bus.

I guess I was still in summer mode, not really checking his homework folder too thoroughly, letting him handle his paperwork. Then last Tuesday was open house, and sitting in the airless room with forty other parents listening to the two teachers review this year’s expectations—things like taking notes and reading comprehension and something called Frindle—I started to panic.

Take notes? How is he going to take notes?  I wondered.

In What Color Is Monday, I wrote about 8-year old Jack, and trying to get a handle on the stuff we were working on:

“His issues seemed so widespread; could we really teach Jack to move the sound of a siren to the back of his brain and concentrate on his spelling instead? How do you increase a person’s theory of mind and help them understand that others think and feel differently?  We’d moved from reminding him to make eye contact and notice a squirrel outside the window to trying to teach him that he can handle the sensation of a loose tooth.

I was overwhelmed.”

The next night I took all of his folders out of his backpack and organized his papers into piles. I opened his grammar book.

“Jack, you have a quiz tomorrow. Let me help you study.”

“No.”

“Jack, if I say ‘Joey, do you want more ice cream?’ what kind of sentence is that? Is it declarative or interrogative?

“Punctuation. It is punctuation. No more.”

Again and again I called him back, and he started to flap and flail and scream that he was done, he could not work anymore.

Here’s the thing about Jack. He does not learn anything he doesn’t want to learn. I’m sure there is a big fancy term for this, but essentially, if he is not interested in the topic, he refuses to talk about it.

Late Friday afternoon I sat down at the counter where he was writing something on a white sheet of paper.

“Uh, Jack? Mrs. C. called from school today.”

“She did. She called you.”

“Yes. She told me you got a 36 on your grammar test.”

“Oh.”

“Jack, is a 36 good or bad?”

“It’s good. I think good.”

“Jack, it isn’t—“

“No more. I am working. On the dinner menu for next week.”

He bent his head over and gripped the pen.

“But Jack—“

“NO MORE. Thursday. Thursday we will have chicken tenders. Buy Bisquick. It needs one cup.”

Watching him pore over the menu, drawing uneven boxes and crossing out words, I was swept by a tidal wave of tenderness and heartache so deep, I had to look away.

With his head down, he said quietly, “I was excited to fifth grade, but you are about this mad.”

“Jack, I am not mad,” I started to explain. But when I looked over at him, I could see he was already gone, lost to the world of Bisquick and chicken and meals.

I am very conflicted about this; on one hand I want to wrap my arms and legs around him and keep him safe from the demands of the real world—taking notes and reading Frindle and rounding up to whole numbers. But I know if I do that, he will just stay right where he is forever, sitting at my kitchen counter trying to figure out what we should have for dinner on Tuesday.

And he was so excited about fifth grade, that’s the thing. All summer, he could not wait to have a locker, to switch classes, to buy a sub for lunch. His naiveté about the whole transition pains me deeply.

People tell me often to calm down, he will be fine, fine, just fine. And I nod my head and smile and say something like, “Oh, I know. He’s working so hard!”

But there are certain realities I cannot overlook. His work is a mess, his handwriting barely legible. He’d rather cross-reference the price of snow cone machines on Amazon than figure out decimal points. He has no idea how to take notes—to listen to the words coming from the teacher, organize them in his own mind, and jot down the important points for review later.

I don’t know how to reach him.

I don’t know how to tap into that brain and move all the stuff about license plates and Disney movies and dinner recipes aside so there’s room for grammar and science. I don’t know how to get him to listen to the teacher when she lectures, instead of retreating into autism’s inner sanctum after three minutes,

Maybe you’re thinking I should come up with better ways to discipline him–maybe take away his music if he doesn’t complete his reading log or tell him he can’t watch The Muppets unless he studies for his quiz. And we have tried all those things and more, with no success.

It’s as if we’re asking him to cross the Grand Canyon using only a tightrope. Jack’s never walked on a tightrope. He does not know how to balance on one; to put one foot steadily in front of another without looking down. He would be very, very scared.

And then we tell him that he can’t wear shoes while he steps across the thin wire. He can’t have one of those big long pole things to help him keep his balance. We take away all the tools that keep him calm and steady and focused. And when he stims and flaps and eventually falls, we scratch our heads and wonder why.

Right now, the paragraph in the book would read like this:

“His issues seem so widespread; can we really teach Jack that a 36 is a terrible grade? How do you a force a person to work on round numbers when he keeps getting up from his chair and screaming and hitting his head? How can I get him to stop thinking about Maleficent and start thinking about school before he gets so behind he never catches up?

I am overwhelmed.”

Of course, we can modify. We can modify homework and modify the way he takes tests and modify so he types on a computer instead of writing with a pen. But one day I fear I will wake up and realized we’ve modified Jack right out of a degree.

My son might not graduate from high school. This is very real.

And if he does not graduate from high school, if he does not walk across the stage and accept a diploma the way his older brother Joey does one year before, he will be destroyed.

Am I putting the cart before the horse, so to speak? Maybe. Lots of people think I am. They say stuff like he’s only in fifth grade, take it easy. But I have never been able to take it easy when it comes to Jack.

Because it will be me—only me—who has to sit this boy down when he is seventeen and tell him. It is me who will have to watch his face twist in pain and frustration while his heart shatters.

See, he may not learn the way the rest of us do, but that doesn’t mean he doesn’t know.

Friday night I dreamed I was sitting on the floor trying to spell the word nourishment. I had a pen and four quarters. I wrote the letter ‘N’ in careful cursive, and then laid all the quarters down.

I knew it wasn’t right, but I didn’t know how to fix it. I stacked the quarters up. No, that wasn’t it either. If only I had some dimes, I could use them to finish spelling.

Joe came in and looked over my shoulder. “You can’t spell a word with quarters.”

“I know, I know,” I told him, shaking my head. “Maybe if I had a muffin tin.”

I woke remembering the dream; my rising panic, Joe’s confusion, the quarters stacked in an uneven tower.

I lay in bed listening to the house awaken; Wolfie thumping his tail in his crate, Jack slamming his drawers shut, a toilet flushing down the hall. I kept picturing the muffin tin I longed for to help me spell nourishment, the way the overhead light glinted off of its shiny metal surface.

It was the tools. I did not have the right tools to spell.

Throughout the morning I thought about 8-year old Jack and 9-year old Jack, and now, 10-year old Jack. The thing is, we did teach him to do those things. No, that’s not right. We are teaching him those things. Every day we remind him to look in our eyes, and how Rose does not care for chicken fingers. And he just happens to be an excellent speller.

It is an everlasting battle, this autism thing.

No, that’s not right either. It’s an everlasting commitment, this autism thing.

If I had to update the book, I think I would write,

“His issues seem so widespread; can we really teach Jack that a 36 is not enough, to work for the 80 instead? How do I give him the tools to take the notes and write the sentences and round to the nearest hundredth, when all he wants to do is organize dinner?

I am overwhelmed.

But we aren’t done yet. We will never be done.

From where we stand, the tightrope is stretched out before us. It is stretched tight across autism’s wide gully. But together, we will cross to the other side and figure out that one cup of Bisquick is indeed, a whole number.”

Jack’s dinner menu.

 

 

 

 

A View from the Floor

Allow me to introduce myself. My name is Wolfie.

I am half Bichon and half Shih-Tzu, also known as a Teddy Bear Dog or a Zuchon. I am sixteen and a half pounds and I barely stand a foot off the floor, but do not let my size fool you. I may be small, but I am mighty.

I’ve been with my family for five months now. Everyone keeps saying the Easter Bunny brought me as a surprise.

But I remember the two biggest people in the family—the mom and the dad people—came to pick me up in a conference center off the highway in a small town called Portsmouth. We drove around for hours and then snuck home because they said the kids were finally asleep. I never did see a bunny.

For the first two weeks I was in my new home, I tried this strategy:

Pee on couch. Look adorable.

Poop on rug. Appear irresistible.

Pee on floor. Tilt head to one side with cutest expression possible.

This is me.  I had just peed on the ottoman.

This is me after I peed on the ottoman.

This went on for a while until the dad guy said I was on something called thin ice and I’d better get house trained soon. He had just stepped in one of my puddles wearing only his socks.

He pretends he doesn’t like me, this dad. But I’m not fooled by him. When it’s late at night and all the small people have gone to bed and the mom is upstairs reading, he sits on the big red couch and he calls to me in a quiet voice.

“Wolf, come on boy, come sit with me.”

I sit next to him and we watch shows that the mom doesn’t like; baseball and politics and something weird called The First 48. But I can tell by the absentminded way he rubs my foot that he’s only half-listening to the television. Instead he’s thinking about his patients and his children and tax returns and healthcare and insurance.

There are a lot of people in this house. Seven. Two big people and five kids. One time a man came and delivered some food in a brown paper bag that smelled delicious. When he stepped into the kitchen and saw all the kids at the counter, he asked if we were having a birthday party.

The round boy laughed and shouted, “Yes! It my birthday! Let’s sing HAPPY BIRTHDAY TO ME! Happy birthday to me!” until the mom said, “Okay, Henry, we heard you. Eat your egg roll.”

This Henry boy is the smallest, but he isn’t too small. Life is very, very exciting for him, and he is very loud about it all. He fills up every room with his chatter and his laughter and his drawings, and he is squishy and delicious and curious and smart. He is so alive, you can almost see his heart beating through his favorite Batman shirt.

There are all these boys and only one little girl. When you look at her you just think about the color pink. She is sweetness and light and airy and calm, like the most delicate wafer cookie you hold on your tongue until it melts.

But she works very hard. She is the first one awake to take me out in the morning, even before I ask, and all day long she is trying to do things for other people; pack their snacks or sweep the floor or straighten the playroom.

Her mother worries and the Dad guy hopes if he tells her how beautiful and smart and sweet she is, she will believe it forever and never listen if someone accuses her of being fat or ugly or stupid or worthless.

I’m not worried, because this pink girl is so very strong.

There is a very big boy, a boy who stands taller than the mom’s shoulder. He wears glasses. They call him a tween sometimes, and I don’t know what that means but it seems to annoy him.

He and the mom can really get each other going laughing. They both like the same jokes. But there is a strain that I don’t think was there before. It feels new.

It feels like the beginning of something and the end of something all at the same time. He is starting to cleave from them, to long for video games and something called an IPhone and movies that are PG-13. The mom, she knows this, and her heart is aching to make the most of the time she has left, before this tween will pack up his glasses and his gym shorts and his Nook and drive down the driveway to a faraway place called college.

I may be very close to the floor, but I see it all.

There’s another big boy, just about as tall as the first boy. He also wears glasses. From behind they look like the same boy and sometimes people mix them up, but I never do.

From what I understand, I was supposed to help this boy. He has something called autism and he was very, very afraid of dogs, even little ones like me.

When the mom first brought me in from the garage where I was hiding and trying to stay very, very quiet, all of the kids squealed and laughed and clapped their hands. But he didn’t. His face was all twisted up and his voice was very loud and angry-sounding.

“I DO NOT like dogs. You have ruined my life. With this dog.”

I don’t know anything about autism or how to help people who have it. So I just did the only thing I knew how: I waited. I waited and waited and one afternoon when no one was watching he crept over to where I was lying on the couch. With one finger he stroked my paw.

“You are. Soft.”

This boy gets very, very mad. One day over the summer his temper rose until it felt like the sun was shining inside the house, the rays too hot to touch. He was screaming and hitting his head over and over again.

“No para! I will not have a PARA!”

I did not know what a para is, but the mom seemed to because she kept talking softly, telling him to take a deep breath and calm down, they would talk about it.

Then he came for her. With his fists curled into the tightest balls he charged her wordlessly. She grabbed his wrists and held them with her long fingers and said, “Enough Jack,” so sharply her voice was like a knife cutting through the hot, still room.

He dropped his arms to his sides and the only sound was his whimpering, no para no para no para. I barked once, twice, my voice not as sharp as hers, more like an ice cube clattering into a smooth glass.

He fell to his knees next to me and buried his fingers into the fur around my neck, where it’s longest and deepest. Through his fingertips, I understood. I knew. Somehow, because of this strange thing called a para, the boy felt different. He felt worried and alone and disappointed.

He felt less.

There is another boy. He looks just like the dad, with dark hair and deep brown eyes that make you think of chocolate. He is all fun, this one.

But every once in a while a shadow crosses his face and his eyes get cloudy, like the rain is coming. That’s when I know he needs a little extra cuddle and I just turn on my back so he can rub my soft, white belly. He rubs it until the sun shines again.

“Come on, Wolfie, run outside with me!”

A couple of weeks ago the big yellow bus started coming around again. We all walked down to the bus stop and everyone was so excited.  But when the kids got on and the bus pulled away, the mom put her head on the dad guy’s shoulder and said, “Oh, Joe.”

Slowly the three of us walked back up the driveway. They looked down and started talking to me in a funny voice with funny words. “You a wittle doggy, wight?  Just a wittle pup-pup.”  I felt confused.

Then I understood. Their babies were gone. Now I was the baby.

Last weekend we all went to a big field to play with a black and white ball. The mom and dad kicked it around with the kids, but the second boy said he only wanted to hold my leash and run with me.

So we did. We ran and ran through the fields together. And with each big step he took I could tell, for the moment, he was free. Free of the shame and rage and confusion and panic that follow him around all day like uninvited guests.

Running by my side  through the rich green grass, he wasn’t a child with autism or a fifth grader with a para or a brother who is not like the rest.

He was, quite simply, just a boy and his dog.

IMG_5325IMG_5326

 

Is Threequel a Word?

Last week I had to bring Jack for an appointment at the eye doctor.

This is fun for a few reasons. I get a long stretch of time alone with my son. We have meaningful conversations and sing out loud together to our favorite songs on the radio and try new restaurants for fun, tasty lunches.

This is not fun for a few reasons; I get to spend a long stretch of alone time with my son and the only thing we really talk about is whether or not spiders in Brazil are deadly and when Carol Burnett was born. If I’m really lucky we talk about Hitler. Jack controls the radio and freaks out if the station has static. He insists we eat at a run-down Bertucci’s off the highway and gets huffy if I don’t order the same pepperoni pizza he does.

By the time we reached the exam room, we’d been in the car for sixty-seven minutes and the waiting room for fourteen. Jack had mentioned Bertucci’s approximately thirty-seven times, and while we waited for the doctor he badgered me for my phone, snatching at my purse and stomping his feet.

“I want to download. The song by Kanie West.”

“It’s Kan-ye Jack. And no, no more downloads today.”

“It’s not Kanye. It is Kan-ee.”

“It is not—“

In the middle of our hissing match about Kim Kardashian’s husband, the teeniest doctor I have ever seen bustled in. I’m talking small. When he stood next to Jack I noticed Jack’s feet were bigger.

He also had on really nice pants. Rich-looking. Ironed, with a crease.

(You might find it weird that I noticed his pants, but a while ago I stopped into my husband Joe’s office and noticed his pants looked kind of worn out, so I’d made a mental note to do some shopping for him.

I’m talking about a man who wore mismatched shoes for an entire year because he bought them by mistake at Marshall’s and he didn’t feel like going back and returning them, so you can see how I have to keep on top of things like this.

In his defense—the one he constructed for himself, obviously—the shoes were very similar in style and color. But still. A whole year.)

“Hi, hi, I’m Dr. W.”

“Uh, hi. I’m Carrie, and this is my son Jack.”

[insert moment’s hesitation here.]

“I like your pants.”

“Uh, yes, yes. Okay. I need to get his chart, I’ll be right back.” And the teeny doctor bustled right back out again. I turned to Jack so I could continue my lesson about Kanye West.

“See, Jack, Kanye is—“

“Why. Are you talking about PEOPLE’S PANTS.”

Folks, when you’ve been lectured about social graces by your son who has been diagnosed with autism spectrum disorder, well, you’ve hit a new low altogether.

“I don’t know. I thought they were nice. Wouldn’t they be nice for Daddy?”

“Daddy can’t wear those pants. They are LITTLE PANTS.”

The doctor came back in and flipped the switch to turn on a giant monitor. Jack’s chart came to life in black and white, mostly in terms I couldn’t understand; myopathy and pupil measurements and corneal dilation.

Handwritten in a large white box at the bottom of the screen, someone had scrawled AUTISM in big bold strokes. For some reason the slightest chill ran through me when I read it. I don’t know why.

On the drive home, after we stopped to eat at the much-discussed Bertucci’s and settled the radio on a mutually agreeable station—one that plays some Katy Perry but also Daughtry—I thought about the appointment, and the way the word AUTISM hung over the exam room like a dark cloud.

How would Jack feel if a doctor just breezed in and said, “Hey, Jack! How are you feeling? Are there any questions about your autism I can try to answer?”

Would it be less of a dirty little secret scribbled across the bottom of medical charts and IEP forms and paperwork?

And really, why is it a secret?  It’s not Jack’s fault he has it. It doesn’t make him a bad person. It just makes him an inquisitive, slightly rigid boy who can be bossy and anxious and obsessive. Because of autism he has to roll a new food around in his hands—think tacos or meatballs or lasagna—before he can put it in his mouth and taste it.

It also makes him sensitive to light and sound. It makes him see Tuesday in shades of purple and remember that his brother Charlie was born on a cool, grey Monday.

Frankly, I’m getting really tired of hissing it like a criminal in the back of a dark alleyway.

He has autism, you know autism, it is autism.

I want to bring it out into the light. I want to bring it out and examine it and understand it and talk about it; with him, with you, with doctors, with aunts and uncles and neighbors and teachers. Especially, I want to talk about it with Jack.

Remember those cards?  The ones I thought about printing after Jack asked everyone about the Nazis during our vacation to Texas? I did wind up having them made. I didn’t do it to be flippant or funny or sarcastic. I did it because I want to start opening up the conversation and ease the spectrum stigma—for all of us.

They were delivered a couple of days ago, and the only person I’ve given one to is Joe’s mother. I had plenty of opportunities to hand them out, but for some reason I didn’t feel ready yet.

When we got home from the doctor’s office the rest of the kids were at still at karate camp, and the house was quiet. Jack flopped down in the family room and turned on the television. Looking at him sprawled across the couch, I decided that before I could hand anyone else the card—the cashier at CVS or the waiter at Bertucci’s or the eye doctor with the nice pants—there was someone else I needed to show first.

I took one out of my purse, sat down on the couch, and handed it to him.

“What. Is this.”

“A card, Jack. A card I made.”

He didn’t say anything, but he held on to it, and as I turned to leave he asked me, “What do you dream. What dreams come true.”

“What do you mean, Jack?  What do you dream?”

“Nothing. I don’t know.”

You know what? This post is kind of a sequel to The Person I’m With Has Autism.  And we all know how I feel about sequels; unless it’s Rocky II—the best movie ever made—sequels are never as good as the original.

But here it is, another sequel. And yet, maybe there’s even a part three to this story about a boy and his autism, Kanie West and tacos with a lot of sour cream. What is a part three called? A threequel?

I’m going to call it a threequel. Because everyone knows that if Rocky II is the best movie ever made, Rocky III is a very close second.

Maybe one day, some day, our threequel will look like this.

I am Jack

 

 

 

A Red Leaf

The other day I came across a picture of 13-month old Joey taking his first steps. I was sitting in a big leather chair nursing four-week old Jack, when Joey put down the block he’d been holding, stood up, and walked.

Huh, I thought, watching—amazed—as my first-born toddled between the coffee table and the chair. Maybe having a little brother will push him a little.

Obviously, that wasn’t exactly how it happened.

We all know the time-worn tale of Jack by now; he didn’t talk, he didn’t point, he didn’t look, he didn’t didn’t didn’t.  All the while his brother one year older did.

Language was certainly Jack’s most obvious delay, and a lot of people suggested that Joey was talking for him, that he didn’t need language because his older brother had so much to say. It drove me crazy.

I remember one day in the beginning of  November, sitting outside in a plastic lawn chair while two-year old Joey and 18-month old Jack ran through our small backyard in Buffalo. I was pregnant with our third son, and was having the rhythmic contractions of early labor. I was certain the baby would come in the next day or so.

As usual, the two boys were playing side-by-side but not exactly together. It was as if they were two planets in a  brotherly solar system; orbiting and rotating on their own axis, but still in the same universe.

All at once Joey rushed to me. In his hand he held a leaf.  “Mama, a leaf. Red leaf.”

Jack toddled over wordlessly, his own chubby hand outstretched. Without a sound, Joey placed the reddish-brown leaf in Jack’s palm. I felt a rush of joy coincide with a contraction; a rare moment of pleasure and pain. Watching the dry little leaf pass between their two hands, I sensed their connection, their togetherness, an unspoken language in their silence.

Over the past ten years they have  blossomed into tall boys with exactly the same color hair. People ask me all the time if they’re twins, and sometimes even I mix them up from behind, but they actually have very little in common.

Are the opposites? I don’t know. Not exactly. They’re just very, very different. Joey is a builder, a thinker, a reader.  Jack’s interests lie in music, in Disney, in pancakes and grocery shopping and license plates. They rarely interact, and any conversation between them is usually in short, staccato bursts.

“Jack. Pass me the milk. Jack. The milk.

“Joey, I need. That jacket.”

And yet, more and more Jack longs to be like his older brother. Once again I notice the gravitational pull between the two boys.

I want to cook eggs. Like Joey.

I want to wear Under Armour. Like Joey.

I want to take French. Like Joey.

This year both Joey and Jack will be in the same school again; Joey in sixth grade and Jack in fifth. And oh, how Jack has waited for this. All last year, Jack quizzed Joey on the logistics of middle school, the lockers and the changing classrooms and the sandwiches you can buy for lunch.

“OK. Joey. You open your locker. And then you walk to Mrs. Opitz class.”

Except Jack won’t take language this year, and probably not next year either. This was decided way back in the spring, the same time the team decided on a 1:1 paraprofessional, modified homework, and a we’ll see when it comes to the sex education video.

(That last one was my suggestion. Not sure I need him to latch onto the word fallopian tube just yet.)

I know, I know, I should have told him outright. I should have told him at the same time I told him that yes, he would have an aide again this year that his schedule would be altered to include something called “Skills” instead of French or Spanish.

But I didn’t. His outrage over having an aide just about did me in, and I didn’t have the energy—the courage—to break his heart any more. So we went through the motions of preparing for school; the school shopping and schedule making and sneaker buying.

Folks, if you’ve never had the pleasure of shopping with a 10-year old boy on the autism spectrum, well let me crack the venetian blinds to my life and give you a little peek.

Jack insisted we had to go to Staples for his school supplies because, “They have the best carts. To put my things in.” Maybe this makes you wonder how often we go to Staples, that he would have such an affinity for the carts. Once a month? Weekly? Every other day?

Once a year. We go once a year.

“The last time we went to Staples was August 22, 2013. It was August 22nd,” he repeated when we pulled into the Staples parking lot. “It was a Thursday.”

Jack takes back-to-school shopping very, very seriously. If the list says one glue stick, we are getting ONE GLUE STICK. Not a pack of three. Not a box of twelve. One.

Looking over his list, I started to sweat.

See, autism’s rules explicitly state NO ONLINE ORDERING, and NO shopping anywhere but Staples on South River Road—not Target or Walmart or Amazon—so you can see how my hands might be tied here.

“Jack.  Look. Here’s a three-pack of glue sticks. We can buy it and divi—“

“NO! We need ONE ONLY GLUE.”

So on and on we searched Staples for the single glue stick, the perfect binder, the blue pencil box to match the blue file folder and the blue spiral notebook. When we were just about done, he pulled another piece of paper out of his pocket. It had been folded into a complicated triangle.

“Now this. This is my list for my language class. French or Spanish. Joey took French.”

I cursed myself for not paying more attention to the list, for not putting it away in the folder with the other kids’ on the last day of school. Instead, he squirreled it away in his room and apparently made it his summer reading.

“So, uh, Jack. I don’t think you’re taking a language this year.”

That’s right, people. I waited until four days before school started to break this news to him. I won’t go into details about the tantrum, the tears, the disbelief, but let’s just say it wasn’t pretty.

That night we grilled burgers for dinner and ate on the patio. The kids were reaching for plates, buns, and pickles, and just as Joe handed me the ketchup I heard Jack.

“Joey. Mom said. No language for me this year.”

I caught Joey’s eye across the table and held his gaze for a long minute. He looked back at me, and turned to his younger brother.

“You know, Jack. Not everyone needs to take language.”

“Okay. I know.”

Tomorrow is the first day of school. Jack seems to be ready. If nothing else, he is organized. Every morning he has come into the my office and wordlessly arranged  and re-arranged and arranged yet again the royal blue binder and the royal blue pencil box and the highlighters and erasers and markers.

I get a pit in my stomach when I watch him perform this ritual. To tell you the truth, my heart breaks a little every time.

Because although he is wordless, he is still speaking volumes. In his compulsive organization I hear I am nervous why no French I am ready I want to be like them like him like Joey.

I hear his fear and disappointment over an aide but no language, his excitement and his anxiety, hope and unease; the rare combination of pleasure and pain.

Here in New Hampshire, the days are still long and warm but the evenings carry the slight chill of early fall. There is change in the air. From where I sit at my desk, I can see just a hint of red and orange and yellow in a sea of green on the trees.

Tomorrow morning my two oldest boys will step on the bus, one after the other. They will probably sit apart. They won’t look at each other or call out or wave. But I’m not worried, because I know they are connected by words I cannot hear, a union I cannot see. They are  independent still, but always together.

I think it all started with a single red leaf.

Jack - leaves Joey - leaves

Look for the Helpers

Last week the Internet exploded with the news of Robin William’s untimely passing.

I liked Robin Williams and I thought he was funny. My favorite movie is probably Mrs. Doubtfire, and Joe and I watched his creepy turn in Photo Booth and ate pad Thai on our old brown couch in Buffalo. I could hardly sleep that night.

So here and there I read blog posts and articles about his struggles and success, addiction and sobriety. But  I was taken aback to see the conversation quickly turn from grief and disbelief to a discussion about depression and medication.

A lot of people, it seems, have an opinion about medication.

My ten-year old son, Jack, is on medication. Without it, the child wouldn’t be able to put one foot in front of the other before his anxiety got in the way and told him to check the wind chill factor.

See, one day when Jack was six, anxiety hit him like a ton of bricks. It felt like he went to bed snuggled under his blue and red plaid quilt one night, and woke up in the morning a different child altogether.

He was afraid of the toilet. He was afraid it was too cold to go outside. He was afraid of the wind, of dogs, of spiders, of the rushing water in the shower. He lost potty training and had accidents all day long.

He started talking to himself, gesturing and pointing and frowning at some invisible person. If we asked who he was talking to, he’d look over slowly with vacant eyes, drop his finger, and walk away.

For six weeks, he never smiled or laughed or giggled. And we were frantic.

I’m sure there were warning signs we missed, little telltale clues that should have tipped us off. But we missed them, and spent the better part of two months battling a storm raging within our young son’s mind and heart.

We struggled for months trying to decide if this was right for us—for him. We explored alternative methods for reducing his anxiety; something called the Wilbarger brushing technique, joint compression, deep breathing. But nothing seemed to abate the snake and return Jack’s smile.

At the end of that long spring, either Jack or I was going on medication, and I decided it should probably be the person who was actually diagnosed with anxiety.

Joking aside, starting Jack on medicine was hardly something Joe and I took lightly. But it worked, he is still on it, and I don’t regret it for one single minute.

Did I ever imagine having a child on regular, daily medication? Of course not. I no more imagined this than I did his autism. I mean, no mother holds her tiny newborn son and wonders if when he’s in first grade he’ll need to take a tiny white pill before bed at night just so he can walk to the bus stop in the morning without freaking out because he thought he saw a spider on the driveway.

The way I see it, it’s like the cavemen looking around at each other and saying, hey listen, there’s this thing called fire out there. It’s bright. It’s warm. It will make our food taste better and keep our bodies comfortable and light up the darkest of nights. But, nah. We don’t need it.

They didn’t say that. They didn’t tell each other to look for alternatives or try spirituality or to just live with their cold, wet conditions. They lit the fire and warmed their hands.

Cavemen didn’t use it for everything. They didn’t bathe in it. They didn’t huddle around it in the middle of summer, when the sun was strong and bright and lit the days with a long golden yellow. They used it when they needed it.

For some reason, when I glanced over the tributes to Robin Williams in my Facebook feed and blog posts and People magazine, I didn’t immediately think about Mork and Mindy or Mrs. Doubtfire or Awakenings. I thought about Mr. Rogers.

You know, Mr. Rogers. The childhood icon who wore cardigan sweaters and changed into different shoes when he walked in his front door.

But it wasn’t the cardigans or the shoes that sprang to my mind. It was this quote:

“When I was a boy and I would see scary things in the news, my mother would say to me, “Look for the helpers. You will always find people who are helping.”

I first heard this passage after the terrible Newtown tragedy in Connecticut, and it soothed me a great deal. It helped me understand that with every heartbreak, there can be goodness.

But still, I couldn’t figure out why my mind kept bouncing back to this quote whenever I saw a piece about Robin Williams. And one afternoon last week it occurred to me; reading about the heated debate over medicine and depression and anxiety in my newsfeed scares me. It scares me because I have a son who will likely struggle with this treacherous trifecta throughout his life.

So, like Mr. Rogers suggested, I wanted to see the helpers.  But suicide, by its very nature, is solitary and lone. At first glance there are no helpers.

But I looked a little closer, and I saw them.

Robin William’s helpers are those who surrounded him all these years, people who laughed at his comedy and listened to his woes and kept his secrets. Who, for the time being, kept his demons at bay.

His wife and children, mother and father, neighbors and friends, directors and co-stars. Although his life  was shorter than most, it was still longer than many. Because people helped him.

I certainly hope Robin Williams has found his peace, and that high above the wispy white clouds people like my Aunt Jean and the children of Newtown are laughing at his characters and jokes and imitations.

But mostly, I hope his helpers find their peace. I hope someday soon they emerge from the darkness of grief and move toward life’s colorful flames.

May they begin once again to behold all of life’s precious gifts; chubby toddlers and surprise rainbows and chocolate cupcakes with a lot of frosting. Warm summer evenings with a touch of fall’s cool breeze, and the beautifully mysterious smile from a little boy with autism.

Jack and Joe

Jack and Joe