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 how old Carol Burnett was when she died. 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. <!–more–>

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

 

 

 

 

 

 

A Trip to a Water Park

This weekend, we went to a water park.

Nothing undoes me like a road trip with my family. It doesn’t help that five out of the seven of us get terribly carsick and need to clutch thin plastic bags pilfered from the Mobil Mart for the entire ride. I am one of the unlucky five.

And then there’s the questions, the constant chatter of voices and laughter and complaining we must endure for the duration of any trip.

At one point I promised my family—promised them—that if one more person asked me how many more minutes or if the water slides were big or small or how much loooonger or if we could stop for lunch even though it was only 10:00 am, I was going to open the car door, tuck my body, and roll right out. While I rolled down the highway I would pull my hair out by the roots.

I described this in detail to make sure they understood. Five-year old Henry was the first to react.

“You will look funny wif no hair!”

And then the rest chimed in with their two cents.

“Sixty-four percent of the population is bald you are too tall to tuck your body you should have worn sneakers for that not those sandals is it time for lunch yet.”

This was approximately eleven minutes into the ride. By twelve minutes, the chatter disintegrated into a discussion about whether or not it’s legal to drive without any clothes on. The general consensus from the back two rows of the minivan is that men can drive a car without clothes, but women can’t because their “tops” will show.

Fast forward forty-six minutes into the ride; eight-year old Charlie unbuckled his seat back and came flying up from the third row of the van like a bat out of hell, screaming and covering his ears.

Rose burst into tears and Jack started to flap his hands and chant you are going to die sit down die die die sit down. Joe and I started shrieking at Charlie to calm down, we couldn’t pull over, he needed to sit now.

And what was all the fuss about, you wonder? Why did this child have an all-out panic attack on the drive to a water park on a beautiful summer afternoon?

He thought he saw a dark cloud and it might rain.

Fun, huh?

Two hours later we trundled into the water park. Five kids exploded from the car, the chaos of imaginary thunderclouds forgotten for the time being. But Charlie was still watchful, tipping his head up to check on the clouds every so often.

We set up a central location by the wave pool and organized towels and life vests and trips to the bathroom, and while Joe ferried the three older boys back and forth between the water slides, I sat and watched my two youngest—Rose and Henry—float around in the wave pool. I was still feeling unnerved by the scene in the car.

Every week I sit at my desk and aim to tell you our story as honestly—as authentically—as possible, and the truth is my third son is stricken with anxiety. He has been for almost a year now.

Sometimes I think Jack’s autism is like a jar full of colorful jellybeans, brimming with colorful pieces of rigidity and anxiety and delayed cognitive functioning.

Charlie, it seems, has stolen a piece of candy out of autism’s jar for himself. Without even asking first, he went right ahead and borrowed his older brother’s anxiety. He worries ceaselessly about the weather and car accidents and Big Foot and spiders in his bed. He has trouble making decisions and staying asleep at night.

It is equal parts frustrating and heartbreaking, terrifying and—dare I say it?—annoying.

The truth is, between my two boys, it feels as though I am battling this snake of anxiety armed with little more than, say, silly string and cheese whiz, when what I really need is a snake charmer; someone who knows the intricate steps to the serpent’s wily dance.

Every single morning before I get out of bed I promise myself I will be better. Every single morning.

I promise myself I will not fall prey to the trap of what is the weather will it rain I am afraid of thunder.

I will not snap and yell stop it stop it stop it you are safe stop worrying all the time don’t you even trust me.

I will be a better mother, a better listener, a better source of comfort when the imaginary rain clouds appear on Charlie’s horizon.

And the truth is, every day I fail.

I fail to be patient.

I fail to grasp the realness of my dark-haired boy’s worry.

I fail to be better.

The truth is, I don’t know what I am doing. I am confused and scared and nervous. At times I cannot believe we’ve been struck twice–not with autism, but with the spectrum’s sneaky sidekick.

And [insert whiny voice here] anxiety is just so hard. It is hard to watch and not help and hard to understand and hard to live with. The way I see it, Jack’s giving us a good enough run with it, and I didn’t really need a second time to practice.

The water park just opened a new slide, and my water-slide-riding people explained that you stand with your arms crossed on a platform, and whoosh! The platform disappears from under your feet, and you slide down.

Yeah, no thank you. I don’t even suffer from anxiety and it made me nervous.

Joe took Joey and Jack up to try it, and after waiting on line and standing on the platform, Jack chickened out and walked back down the long staircase.

An hour later he asked Joe to bring him again, and for the second time Jack came back down the steps. But when he reached the bottom he clenched his fists at his sides and said, “I have to do it NOW. By myself.”

“Are you sure, Jack? It’s really no big deal,” Joe told him.

“Yes. Now. I have to go back. Myself.”

So we all stood at the bottom of the slide and watched Jack make his way up the flight of metal stairs one more time. After a few minutes I glanced nervously at Joe.  “Where is he?”

“He’ll do it, he’ll come down,” Joe reassured me, shading his eyes with his hands and squinting up the long slide.

And after another long minute, I saw a familiar red and blue striped bathing suit come tumbling down the chute.

“Jack! You did it!”

I took a step back as three boys and one girl clustered around their special brother, patting him on the shoulder and clapping their hands. I noticed Rose’s wet hair curling on her cheek, Joey’s proud smile.

I noticed for the first time all day, Charlie wasn’t scanning the blue sky for clouds. He was looking at his brother.

And I overheard heard him ask, “How did you decide to do the slide?”

Jack answered in his monotone, “I don’t know. I tolded myself I could.”

Here is a boy who does not have the language for things like determination or courage, anxiety or frustration. He does not know the meaning of tenacity or perseverance or resolve. After three tries, he simply closed his eyes, felt the floor go out from underneath him, and slid feet first into a pool of water.

This boy, he gives me so much hope; for me, for himself, for dark-haired Charlie.

Hope that even if I never master the snake’s clandestine dance, I can still feel the rhythm and find the beat. I might even pick up a step or two and try to follow along.

All this time I’ve been filling my head with white noise, filling it with vows to be better and do better and think better and better better better.

Little did I know, better is right in front of me. It’s been here all this time.

Charlie and Henry by the wave pool.

Charlie and Henry by the wave pool.

 

This is What a Bajillion Looks Like

I’ve never written a follow-up post before. I’ve kind of stayed away from them, to be honest.

I mean, everyone knows sequels are never as good as the originals. Unless, of course, you are talking about the Rocky movies, in which case it is indisputable that Rocky II is the best movie ever made.

“Yo Adrian! I did it!”

But sometimes rules are made to be broken, even if those rules only exist in my head and no one knows about them and they make very little sense anyway. So this week I have broken my no-sequel-unless-it’s-a-Rocky-movie rule so I could follow-up on our conversation from last week.

Quick re-cap: in my last post I talked about how my 10-year old son Jack feels very, very alone with his autism diagnosis. I compared him to a magical unicorn in that he is unusual and solitary, beautiful and mystifying. I asked readers to post about people in their own lives who are diagnosed with this tricky disorder.

And I was simply blown away by the hundreds of responses. I expected the posts to look like this:

“Owen, 11, New York.”

But you wrote things like this:

“Hey, Jack. This is my son, also named Jack. He has autism. He is seven years old. And, although his social skills are deemed “very poor”, you’ll never meet a human being with a greater ability to “own the room.” You are not alone my friend.”

I read each and every message, e-mail, comment, and post. I read them and I re-read them and when I was done with that, I read them all again. I cried every time.

Joe does not handle the crying well. He does not know what to do when I cry. He kind of clears his throat and looks down at his feet, bewildered. Eventually he offers me a cookie.This usually works, and I stop.

But I could not stop because you kept writing. You wrote stories about your favorite people and how much they love Minecraft and Legos and spaceships and pirates.

“Hello, Jack! This is my 15 year old grandson, who also has autism. He is the wonderful unicorn in my world.”

I saw Jack in your words. I saw myself in your words. I breathed in your hope and encouragement, pain and love.

And the comments from the dads?  Well, they simply dissolved me. I think it’s because I know how much it would take for Joe to share about his son on a blog or in a Facebook message, to reveal the pain and hope and fear that is unique to a father’s heart.

“I have a son who is 14 and has autism ….I am a very athletic person and like most fathers looked forward to teaching and playing sports with my son which I cannot do– but what I can do is embrace the brilliant mind that my son has, his sense of humor, his kindness and his willingness to love — my job in life is to make sure Vinny can live the best life possible.”

Friends from high school reconnected. Old colleagues reached out, and one mother shared about her quiet child’s beautiful smile.

“Hi Jack, My son has autism. He is six. He doesn’t speak at all and he has a smile that can light up a room…just like yours.”

Teachers from around the country spoke.

“I’ve had several students with autism and each one of them has changed my life in some way.”

Minnesota, New Jersey, Oregon, Illinois, San Diego, California.

“Hi Jack! Guess what? I have two sons who have autism. They are twins. They are 13 years old and live in Iowa. One boy loves to go swimming, he loves elevators, and he has always enjoyed watching doors open and close. The other has a spectacular memory (he knows many facts), he sings with perfect pitch, and he plays the trombone.”

We read one message from a family in the Netherlands together over dinner at our favorite Mexican restaurant Monday night. Jack’s face lit with a slow smile, and then he reported, “Amsterdam. Is the capital of the Netherlands.”

“My younger son is autistic. He is eight and likes to play soccer and loves everything Minecraft. He is kind, loving and so much fun :) We live in Iceland. You are not alone!”

A few of you courageously shared a piece of yourselves.

“I have autism. I have a very successful life and I have my share of autism related problems too. But I’m 25 years old, I’ve accomplished much, and I love who I am. He is most definitely not alone.”

Throughout the week Jack asked for my phone so he could read the comments you each left. Watching his face light from within, I could tell you did what I could not. Through words and sentences and paragraphs and social media, you connected my son to a larger world beyond himself.

You showed him that yes, there are other magical unicorns.

“My beautiful 11year old has Autism and ADHD, she too feels alone even when she’s with others.”

Many of your posts about your tender little toddlers reminded me of the days when Joe and I were in the trenches of autism.

See, right now we live with autism, we struggle and sometimes rejoice with autism, but that’s nothing compared to the heat of the diagnosis battle, when you’re trying to figure out services and early intervention and speech therapy, all while your little guy or gal is tearing up the house and starting the car.

I remember.

I wrote here about how the biggest fight I ever had with Joe was over Oreos. And this is true, it was. But perhaps the most damaging fight I’ve ever had with my husband was years later, when Jack was two and a half.

I walked in the door one afternoon in January and announced he was starting in an integrated preschool in downtown Buffalo the following week, and he would take the bus.

“Wait, what? He’s going to school?”

“Well, yes,” I told him. “That’s what we’ve been working towards all this time.”

(What I really wanted to say was, “Why the f%$* do you think I’ve been going to all these appointments and evaluations and meetings for the past six months? Because I like watching my son barely respond to his own name or stack blocks or point his finger?”)

“I’m just saying. Don’t you think this is all a little fast?” Cue enormous argument and four-day standoff.

I remember.

If I’ve learned anything from the posts this week, it’s that autism casts a wide, arbitrary net. Sometimes the net scoops up more than one from a family, other times it is a solitary selection.

“I have not one but two wonderful boys on the spectrum…..Autism is just a facet of who they are, like having brown eyes or blonde hair or freckles or skinny legs or glasses…”

After dinner one night this week, I sat down to my laptop for a few minutes to read all of your comments again and start putting my notes together for this post. Predictably, Jack came in to hover over my shoulder and beg for Itunes.

But once again he was drawn into the thread on Facebook, to the pictures and details and descriptions of your daughters and sons, students and grandchildren, nephews and neighbors. And then he paused for a moment.

“Joe. Cariello,” he breathed. “That is Dad.”

I squinted at the screen and saw this all the way at the bottom of the Facebook thread:

“Hi Jack. My son has autism, and I have loved you since the day you were born.”

Jack bounded out of the room to take his shower, and I sat in our little office thinking back to our fight about integrated preschool. Goodness, how I hated my husband that cold, gray day in Buffalo. I hated him for standing in my way and not understanding my panic.

But now–eight years later–I realize that everyone’s heart breaks differently. Joe needed more time to understand and absorb the neurological anomaly in his tiny son’s brain. Yet I was racing against an imaginary spectrum clock, racing to find services and early intervention and the best occupational therapy.

In the end we were both right and both wrong and both heartbroken.

I guess all this time I thought bajillion was a number, a fictitious way to quantify replies to a random blog post. You have shown me I was wrong. It’s not a number at all.

Bajillion is confusion and fear and golden dogs named Scooby. It is boys from Michigan and girls from Utah and a 13-year old with perfect pitch.

It is rage and disappointment, grace and unity. It is facing each other across the dinner table night after night with the same pit in your stomach while your son screams and thrashes on the floor because the squash is too yellow too yellow too yellow.

It is Disney movies and breathtaking memory and the extraordinary gift of unusual people. It is brothers sliding down autism’s slippery bell curve together, laughing and giggling and looking up to the bright blue sky overhead.

It is a no rules Yo Adrian kind of thing.

If you want, you can click here to see the entire thread of Facebook comments from the week. Warning: reading them may cause crying. And laughing. And head-nodding. Who knows? You may even see a unicorn.

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