Jul 212014
 
Our Messy, Beautiful Summer

A guest post by Carrie Cariello

JackDear Jack,

Lately people are talking all about autism’s rising statistics. They bring up numbers like one in eighty-eight and say things like now it’s one in fifty-five and they wonder where is it coming from why so many more?

Some days I don’t give a damn about the numbers. In fact, when people mention the numbers, I want to put my hands over my ears and shout stop talking about the numbers I know all about the numbers and the statistics and the gluten-free and the hyperbaric chambers and the genetics and the therapy dogs and the vaccinations and the allergies and the blah blah blah.

Because you see, Jack, my son, has autism.

My son has autism.

My son has autism.

You have autism.

When you were first diagnosed eight years ago, I didn’t know a single person who was on the spectrum. In fact, my only experience with autism was from this movie called Rainman with Tom Cruise in it.

I was terrified when you didn’t talk. You didn’t point or make eye contact or recognize us. So we began the roller coaster of evaluations and paperwork, and learned new terms like joint attention and pervasive developmental disorder and global delay.

But, still, we thought you would outgrow it. Your father and I were convinced this was just a hiccup; we’d get you some speech and you would start talking and this would all be behind us. But you’re nearly ten now, and you haven’t outgrown it.

There were so many things Daddy and I didn’t know back then.

We didn’t know how long and loudly a three-year old could throw a tantrum in a crowded grocery store.

We hadn’t understood the amount of self stimulation–or stimming–one small boy could do throughout the day; whirling and jumping and grunting and hopping.

We couldn’t figure out how to tame the slithering snake of anxiety that threatened to steal your six-year old smile.

We never anticipated the power of family, how each in their own way your three brothers and one pink sister would push you along, yet pull you closer; keeping you in our world even when you’re drawn to autism’s more compelling inner universe.

When people mention statistics, I want to tell them how every afternoon your 6-year old sister, Rose, waits for you to get on the bus after school. How she quietly asks your aide, “Did he have a good day today? If he gets upset, you can come get me. Because I know how to help him.”

Or how we watched the Wizard of Oz for the thirty zillionth time last month, and when the movie was over you said, “The Lion. He has autism.” Stunned, I asked you why, why you thought that.

You hesitated for a moment, searching for the words you needed, and then you answered in your halting, robotic tone, “Because. He is afraid. All the time.”

And that might have been the single most heartbreaking thing I have ever heard.

But you are so brave Jack. Every day you wake up and pull on your khaki pants and your favorite striped shirt and face a world that is not made for you – a world full of loud fire drills and people who talk too fast and long, busy math worksheets. A world of Jack not this way, do it that way, that’s not right.

I remember one Halloween when you were about three years old. I’d found three matching frog costumes at Old Navy for you and your brothers. You went crazy when I brought it out of the bag – you wouldn’t even look at it. As I dressed four-year old Joey and two-year old Charlie, I wondered to myself, “Why can’t he be normal?”

Now there are days when I think to myself, “What if he were normal? I would have missed out on so much.”

But you wish you were normal, I know. You are in a tender place because you’ve just begun to discover you have a diagnosis. And although we count our blessings to be able to consider you high functioning, there is a price to having one foot firmly planted in the typical world and the other planted on the spectrum. That price is the knowledge you are different, diagnosed, not normal; the knowledge that you have an aide but your brother Charlie does not.

You have told us, “I do not want it. I do not want this autism in me.”

I have a lot of hopes for you, Jack, and one of my biggest hopes is that there comes a day when you appreciate your autism as much as I do.

Now, I appreciate your autism but I do not always love it. Or understand it. Or have patience for it. Take this morning, for example. I just wanted to make my cup of coffee and have a few quiet sips before I brought you guys to the bus stop. I did NOT want to listen to a lecture about why the K-cups should stay organized in neat little rows according to flavor and color.

I wish I could show people all the license plates you and Daddy hung on the wall in the playroom. For over a year you were obsessed with them, and when people heard about that, they started to mail them to us. One by one they pried them off their old cars and trucks and motorcycles, and sent us Nevada and Tennessee and Georgia and Missouri, until we had collected all fifty states.

I want to tell everyone that yes, the statistics for autism are mysteriously on the rise, but I think the world is ready. And we have a wall full of license plates to prove it.

A lot of times people ask for my advice about autism. They want to know if I have any idea about how to increase language or make the tantrums stop or reduce anxiety. And I always wave my hand and chuckle say something like no, no, everyone is different I can barely figure out Jack.

But when I tell someone this—that I don’t really have any advice to give—a memory pulls at my subconscious.

It’s a memory I have from last summer, when our family took our first camping trip with together. You were so, so excited, Jack. Remember? We bought a 10-person tent so the entire family could sleep together. We bought an air mattress so Daddy could rest comfortably on the tricky bulging disc he’d had for months.

And after we set up the tent and all five of you kids took turns rolling around on the air mattress and digging your dirty feet into our pillows, we decided it was for only the grown-ups and shooed you off of it.

When nighttime came, the temperature dropped right along with the sun, and by late evening it was in the low fifties. We bundled into sweatshirts and pajama pants and all climbed into the tent to sleep. Somewhere around 2:00 am you called for me. “Mom. I want to sleep on the mattress.” I told you no, you needed to go back to sleep before you woke everyone else up. “Mom. On the mattress,” and I answered no, go back to sleep. I drifted back to sleep myself, wondering why you were being such a pest.

The next morning everyone was up early. I was sitting outside of the tent, and you climbed into the small chair with me. Looking out of the corner of your eyes, you whispered, “In the night. I was colded. In the night.”

As the morning sun streamed through the trees I looked down and realized that sometime in the night you had wriggled out of your pajama pants. You weren’t wearing the white t-shirt you had put on before bed.

All night long, you were cold. Freezing, probably. Once again I was foiled by the limits of your expressive language. I can’t tell you how many times I’ve thought about that night, how I told you to go back to sleep. And every time I think about it, I hate myself.

I make mistakes. Every day I make mistakes.

Last Tuesday you were in the school play, Thwacked. You had a pretty big part as one of the frogs.

For about forty-two minutes I watched the performance with a knot in my stomach. I watched anxiously as you stimmed and jumped and hogged the microphone. When other kids hesitated to say their lines you shouted them out impatiently. I was so nervous you would tip over the microphone or scream out something rude or stim yourself right off the stage.

But for the last ten minutes I made myself relax. I made myself sit back in my metal folding chair and uncross my arms and just take it all in.

My son is in the school play.

My son is in the school play.

And watching you sing it occurred to me: nearly eight years later, you were wearing a frog costume.

When people ask about your autism, maybe I should just tell them the truth. I should tell them all of the things the statistics don’t say.

Autism is confusing and scary and messy and beautiful and green and warty and electrifying. It can eat a marriage up alive and baffle the grandparents and make me laugh out loud. It is heartbreaking and yet it is ordinary.

Because of autism, I’ve learned that all I really need to do is listen even when there are no words, and try to feel the Lion’s fear in your heart. Most of all, I need to warm you when you are colded.

Jack, the truth is this: my son has autism. And I love you more every single day.

frog-costume

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Carrie Cariello is the author of What Color Is Monday, How Autism Changed One Family for the Better. She lives in Southern New Hampshire with her husband, Joe, and their five children.  She is a regular contributor to Autism Spectrum News and has been featured on the Huffington Post and Parents.com. She has a Masters in Public Administration from Rockefeller College and an MBA from Canisius College in New York. At best estimate, she and Joe have changed roughly 16,425 diapers. You can learn more about Carrie and her journey with marriage, autism, and motherhood at CarrieCariello.com and on Facebook and Twitter.

This post is part of Momastery’s Our Messy, Beautiful Summer series.

Our Messy, Beautiful Summer



Carry On, Warrior
Author of the New York Times Bestselling Memoir CARRY ON, WARRIOR
Join the Momastery on-line community on Facebook, Twitter & Pinterest


Jul 182014
 

marriage-post-its

When Craig and I separated, I was approached by groups asking me to be a poster girl for Leaving.

When we reunited, I was approached by groups asking me to be a poster girl for Staying.

Um, no thank you, I said to all the groups.

Here is what I will be the poster girl for:

In the midst of the pain, find some time to Be Still every day. Turn off the voices of friends and family and media and church and blogs and books and listen there for the voice of wisdom that arises in stillness. Because right now- making decisions is not about doing the right thing or the wrong thing. It’s about doing the PRECISE thing. The PRECISE thing is always incredibly personal and unique and often makes no sense to the people in your life. That doesn’t matter right now. You answer to no one except yourself in the quiet.

Don’t get too excited, because this voice will never offer you a five year plan: just the Next Right Thing. It will never tell you what’s at the end of the path- just where to step next. Luckily- this is always good enough. The Next Right Thing, One Thing At A Time- Will Bring You All the Way Home.

After walking through Sister’s divorce/ remarriage, my own separation/ reconciliation, and reading the stories from women around the globe about love lost and found – I have come to believe this:

Some loves are perennials-they survive the winter and bloom again. Some are annuals- beautiful and lush and full for a season and then back to the Earth to create richer soil for new life to grow. The eventual result of both types of plants is New Life.

The only way to find out whether your love is perennial or annual is to Be Still and Do That Next Right Thing until more is revealed. That’s just the Way It Is.

So does a Warrior Go? YES. If that’s what her deepest wisdom tells her to do. Does a Warrior Stay? YES. If that’s what her deepest wisdom tells her to do.

Put that on a poster and I’ll put my face right the heck on it.



Carry On, Warrior
Author of the New York Times Bestselling Memoir CARRY ON, WARRIOR
Join the Momastery on-line community on Facebook, Twitter & Pinterest


Jul 162014
 
Our Messy, Beautiful Summer Week 4: Beginning Again

A guest post by Jennifer Ball

lavendarHow long has it been? You should really be over it by now.

You need to move on.


You’re better off without him! Time to live it up! Hey…it could be worse!


I could live to be 124 years old. Older, even. I could live forever and there are things about that evening I will never be able to forget.

How the August air hung low and thick over the patio that night. How the single candle we had burning flickered, back and forth, even though I swear there was no wind. How I could see inside the house from where I was sitting, see the warm inviting glow of the kitchen light fixtures spilling out onto the lovely hardwood floors. How I could hear a neighbor dog barking, barking out to everybody and nobody in the dark. How the spot on my abdomen, the same area where my numerous c-sections happened, was still sore and tender from the tubal ligation I’d had the week before.

How cool and smooth the wood of the patio table felt on my forehead, and how odd it was that I couldn’t cry.

How time slowed down, and then for a few seconds, stopped. That must have been when I cataloged all of these memories. All of these sights and sounds and feelings, filed away under the heading, “The Night He Left Me”.

We’d been married for 12 years and there were four children made during the first half of those years. Was our marriage perfect? Were we happy?

No. And yes. At least, I thought we were happy. I thought he was happy. I assumed I was happy.

Were there warning signs? Did you know? Come on. You must have known.

I was up to my armpits in kids. They were little and active and oh my god there were FOUR of them! Our house was old and falling apart, we had cats who sometimes peed in it and my husband left in the morning and came home at night. I wasn’t looking for signs of anything other than maybe a sign that this too shall pass or that someday I’d have a few minutes to myself so I could stop and BREATHE and remember to ENJOY the beautiful chaos that surrounded me.

No. There were no signs. No. I didn’t know. I had no clue.

And then, that night. The words flew fast and slippery into the air and like a little black thunderhead they floated over to me:

“Jenny…I’m not happy. I feel like I live in a prison. I need some time to myself. I’m leaving.”

He didn’t apologize. He couldn’t look me in the eye. He had sunglasses in his hand, I remember that. And as he talked, as he gave me his goodbye speech, he tapped them on the hard table in perfect cadence with his words. Like a fancy expensive metronome made in Italy with the finest polycarbonate glare-resistant lenses.

Tap. Tap. Tap. Tap. Tappity–tap. 

He said he’d call me later in the week to “figure things out”. He went inside the house, he was swallowed up in that warm inviting kitchen light and he said goodbye to our babies and then he left.

He didn’t say goodbye to me.

Sometime later, after the lawyers had joined our merry little party, after the shock of being left had begun wearing off, I found out about her. I had done a good job of convincing myself, and probably nobody else, that he’d left because of a mid-life crisis, or because he was depressed or because he needed to find himself and a two-bedroom apartment with a tiny balcony and free cable was the place to do that.

But then. I found out about her. The woman he went to, when he left me.

All divorces are different. Those that involve another person though, a Plan B who waits quietly (or not so quietly) in the wings…those are particularly awful. The scars these divorces leave are jagged and ugly and oh-so-slow to heal.

They are disfiguring, at first.

You see it every time you look in a mirror. You used to see YOU when you lifted your gaze to meet the one in the bathroom or the bedroom or the hallway. YOU. Maybe you were a young and pretty and tired mama. You might have been a woman of a certain age, with some mileage around your eyes and lines on your cheeks that deepened when you smiled big. It doesn’t matter what you used to see in that mirror.

Now you see the woman who was left. You see the one who lost, the one who didn’t measure up. You see the one who was too old or too fat or too cold or too busy or too lazy. You see the one who just couldn’t compete with the Other.

You see the one who was left.

I’m not going to lie or sugarcoat or get all Polly-freaking-Anna on you here. If you’re going through this, if you’ve been left, you need to know the truth.

It hurts. It’s humiliating and degrading and there will be moments (or hours or days) when you will want the world to open up and swallow you whole. You will maybe do what I did, and think about ending it, ending your life. Write eloquent, tear-stained goodbye letters to your children, your parents. Your husband. Hopefully, you will also do what I did and throw them out after writing them.

Because you need to stick around. Your kids? Oh, I could write a book about what this does to your kids. But the words here, the words I’m clickety clackety typing out right now, these words are for you. The one who was left. I’m telling you, you need to stick around.

I’ll tell you why: after some time passes, after the lawyers have collected their fees and you’ve signed and initialed a stack of papers that are taller than Jack’s giant beanstalk, after you’ve stopped wearing your wedding band and you’ve downloaded “I Will Survive” by Gloria Gaynor onto your iPod…

You’ll look in the mirror one day.

And instead of seeing the one who was left, the one who wasn’t chosen, you’ll see someone else. A familiar face, a strong and beautiful face. There might be a few more worry lines on that face, maybe there’s a new strand or two or twenty of gray in the hair…but you’ll know that face.

It’s YOU. And you will smile at your reflection, you’ll admire the determined tilt of your chin, the knowing and proud look in your eyes. You’ll remember what it felt like to be left. You’ll remember how sad you were and how mad you were and how desperately you wanted things to be different.

You’ll remember feeling like it was the end of the world. And now– you’ll know you were half right about that. One world did end. The world of your marriage, that world filled with promises and hopes and dreams, it did end when he left you.

But oh, my sweet, strong warrior friend…oh my goodness. While that world disappeared into a black hole of grief and endings, a whole new world was born. And this new world, the one you are in right now?

It’s yours.

Is it the one you pictured yourself in, all those years ago? The one you imagined while resting your head on the chest of your husband, after the sex happened and the two of you shared that lovely afterglow, embraced in the dark and whispered about the future?

No. It’s not. But again, I tell you:

This new world is YOURS.

I won’t bullshit you. This new world can be scary. It can be intimidating and overwhelming and at times it can feel impossible to navigate. You will make some mistakes. You will mess up. But that’s okay. Because like a baby who stumbles while learning to walk, you recover from each misstep. You get up and you start over. One freaking foot in front of the other, sister.

With every day that passes, milestones will be reached. While your old world ended with a whole lot of “lasts”, this new world is full of “firsts”:

The first time you don’t think about him, not once, from the time you wake up until your head hits the pillow.
The first time you don’t think about her. About them. About what they did and where they did it.
The first time you realize you didn’t cry that day.
The first time you laugh. Hard. Like, pee-your-pants laugh.
The first time your kids mention something about “dad’s house” and you don’t wince.
The first time you feel the first-date butterflies. And the first kiss bliss.
The first time you realize that somehow, some way, you seem to have forgiven him.
The first time you understand what “moving on” means.

The first time it hits you, and I mean really HITS you:

You survived being left.

Jennifer and family

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Jennifer writes about life after divorce, parenting teens and her uncanny resemblance to Hagrid at her blog, The Happy Hausfrau. She is currently dreaming up new ways to put off finishing her tragically hilarious memoir, “What To Do When Your Husband Leaves You”. You can find her on Facebook or cowering in the corner on Twitter.

This post is part of Momastery’s Our Messy, Beautiful Summer series.

Our Messy, Beautiful Summer



Carry On, Warrior
Author of the New York Times Bestselling Memoir CARRY ON, WARRIOR
Join the Momastery on-line community on Facebook, Twitter & Pinterest