It’s the Little Things

A couple of weeks ago, a website called The Mighty invited me to participate in their November writing challenge. Basically, in the spirit of Thanksgiving, they asked me to submit an essay expressing gratitude for someone special in my life.

I was planning to write about my husband, Joe. You know, because I love Joe!  And I am grateful for him! Joe is awesome.

That is, I was grateful for him. Until last Thursday at about noon.

“Who are you talking to?” I asked as I hurled a second bag of garbage into the giant dumpster.

“Hang on a second, hon,” There was a weird muffling sound on the phone, and I could hear him mumble something.

“Oh, that was the waiter. I was telling him I wanted the lobster bisque.”

“Uh huh. That’s nice,” I said, feeling my face tighten.

I was at the dump. Or, as our town euphemistically calls it, the transfer station. We had a ton of pizza boxes piling up in the garage from Jack’s playdate/party, and somehow, in the middle of November, a bunch of flies in the house.

Joe, on the other hand, was in Boston for some dental class and dinner at a fancy restaurant, followed by a night in a beautiful hotel. Or, as he euphemistically calls it, study club.

Lately, he’s has been pretty busy with this kind of stuff; conferences and work dinners and dental meetings. He’s out once or twice a week in the evenings, and for some reason, this really annoys me. It’s as though he’s a carefree balloon, gliding and soaring along without a worry in the world, while I am the anchor; securely fastened to the house and the five kids and the homework and the garbage.

Some days, I would like to be the balloon. I would like to float and sparkle and bounce. I would like to  eat lobster bisque for lunch and sleep in downy hotel beds without the steady buzz of wayward flies.

As I turned my blinker on to make a left out of the dump/transfer station, I ticked off all the things I know about the house and the kids but Joe doesn’t: shoe sizes and invitations to birthday parties and the way Jack insists on putting Chapstick on his lips before he heads out the door to the bus. Teacher gifts and play dates,  bus notes and spelling quizzes.

Like the crescendo in an out of tune orchestra, my gripes surged and swelled. He never knows what time Charlie’s drum lesson is, he always forgets that the kids have religion on Wednesdays, he leaves his pajama bottoms on the floor.

Yes, I know Joe works hard and provides us with a very nice lifestyle and we have a beautiful house. I know I am very lucky to be able to stay home with the kids and I have a lot of free time now that they’re all in school.

And truly, I am grateful, in the abstract way I am grateful for things like health insurance and the environment and Ann Taylor Loft.

But sometimes, it’s the little things that overtake me. They disrupt my general feelings of goodwill and kindness.

The evening didn’t go much better. I made a crummy dinner—grilled cheese and noodle soup—because for some reason, I can’t be bothered to cook real meals when Joe is out. Selfishly, I used the last piece of ham on my sandwich. Kids don’t need ham. It’s bad for them. Everyone knows this.

“ALBU-QUERQUE is a tur-key!”

“Yes, Henry, I know. That song is really fun. But sit right on your chair and eat.”

(Honestly, the number of times I say sit right on your chair in this house is simply astonishing.)

“AND he’s FEATHERED and he’s FINE—“

Jack, his inner party planner unleashed ever since he had a few friends over last week, interrupted the singing.

“Mom. My birthday party. I want a DJ.”

“Uh, really?  Well, your birthday isn’t until May—“

“And he WOBBLES and he GOBBLES—“

Henry,” 11-year old Joey cut in. “Stop with that song already. Mom, I need to bring a gallon of syrup to Boy Scouts tonight. You know, for the camp out this weekend? Dad promised we’d bring it.”

Oh, did he now, I though churlishly.

“And he’s absolutely MINE!”

“Mom, how do you spell phone booth?”

“Do you think celebrities. They come to parties? I could invite Taylor Swift.”

“What?” I asked, swatting away a fly. “No. I don’t think they do. They’re busy. Joey, look for some syrup in the cabinet, and Charlie, sit right on your chair before you fall. Rose, it starts with ph, can you sound it out? Henry! That’s my sandwich!”

“But it have HAM in it! I love ham!”

I watched my 5-year old gobble my coveted grilled cheese like Albuquerque himself, and I felt a surge of rage. Then, while they each finished up their dinner and wandered away from the table, I checked Facebook on my phone and saw this picture.

Cheers! Study club is fun!

Cheers! Study club is fun!

I put the kids to bed and sat down to begin writing my submission for The Mighty, but I wasn’t in the mood. Gratuity was far out of reach at the moment. Fiction is not my genre, and I didn’t feel like making up a bunch of crap just to submit a post.

Instead, I started to go through old essays to see if I could rummage one up to use. And I came across one called This is Marriage, where I wrote about Joe’s back surgery exactly one year ago. I re-read it, and considered the single best piece of advice I have ever heard about relationships: never go straight to anger.

In an act of sheer and utter will, I opened up Word and made a quick list of little things I appreciate about Joe:

I am grateful that he always fills my car up with gas.

I love watching him laugh with his brothers.

I love how you would go out for dinner every night of the week.

I am grateful for the way you sat on the porch one stormy day in August, holding a nervous Charlie on your lap in the big wooden rocking chair, counting the loud thunder and the bright flash of lightning.

I am glad you are in charge of carving the pumpkins.

I love the way your face brightens, then softens, then opens, when your son with autism hesitates outside the door and calls out, “Dad. Have fun. In the Boston.”

Just as I typed the last line, Joey burst in from his Boy Scout meeting and Wolfie started to bark. I ushered them both up the stairs to bed, and sat back down at my desk. I read over the list, and I noticed how I unconsciously  changed “him” to “you” about halfway down.

I noticed how throughout the day, I went straight to anger. I skipped over the uncomfortable feelings of insecurity and loneliness and envy.

Because for the first time in eleven years, I am alone all day. There are no noses to wipe or grapes to cut or chubby little hands to hold in the parking lot. I miss them.

I miss him.

Our family is changing and I am adjusting in a new role. I so badly want to fit Joe and I into placeholders—a balloon vs. an anchor—so I can know who I am and what I do. And then I can hate him for it.

Gratitude is hard.

But the fact is, some days he is the balloon and other days he is the anchor, weighted down by nine million pumpkins and an anxious son. Over time, we will swap and trade: one of us will soar, weightless and buoyant, while the other watches from the ground, fly swatter in hand.

When The Mighty first asked for a submission, I assumed it meant I needed to wax poetical about all of Joe’s magical qualities. I thought I should go on and on about how thankful l I am for the way he provides financial security and health insurance and Ann Taylor Loft.  (I can’t say anything about the environment here. The guy drives a Toyota Sequoia.)

But really, it’s the quirky little things I appreciate most; the Jack-o-lanterns and the full tank of gas, and the way he walks in the door with a smile and suggests we go out for dinner at our favorite Mexican restaurant.

I don’t think I am alone in feeling this way. Who would you like to thank? In the comments below or on Facebook, will you consider expressing your gratitude about a special person on your life?

I only ask that you share something small, something quirky, something memorable. Believe me, the little things really do add up.

I’ll go first.

I appreciate the way my husband, Joe, stretches his arm across me in the car when we stop short for a red light.

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To the Kids Who Came Over to Play

First of all, thank you for coming to Jack’s Very First Play Date/Party in the Fifth Grade. And yes, that is how he refers to it.

A few weeks ago, he and I were eating lunch at Chipotle together and he told me, “People. In my school, they have play dates.”

I agreed, yes, they do.

“I will. Have one. On Friday, November 7th. Until 6:00.”

“Um, okay Jack. But who will you invite?”

“I know. I know them,” he said, and took a huge bite of his beef taco.

As soon as we got home he presented me with a list. I didn’t recognize any of your names. I didn’t know your parents or your phone numbers or e-mails.

“Jack, you need to ask for their phone numbers so I can call their parents and organize it.”

“How. I can’t know how to do that.”

So night after night, while his Dad loaded the dishwasher and I cleaned the counter after dinner, we rehearsed how to ask you, the way he should walk up to you in school and invite you to our house for pizza and a movie.

He was so scared you would say no. He was terrified of being rejected. Tentatively, he offered you his tender, delicate heart, thinly veiled in the promise of popcorn treats and a Disney movie.

“What if they. Make it wrong for me. The numbers. So they don’t have to come.”

I want to tell you that this made me feel many things. It made me feel sad and hopeful and surprised. It made me feel excited and uncertain and protective. It made my heart feel like it was weighted and heavy.

I didn’t know how much you knew about him. I couldn’t tell if you knew that Jack has, well, I’m not sure what to call it—a disorder? A disability? He has a diagnosis. That’s a better word; a diagnosis of autism spectrum disorder.

You can’t really see autism; it’s buried deep inside Jack’s brain. But we know it’s there. It makes him think much, much differently than you or I might.

Let me give you an example. Remember the worksheet you guys had to do a couple of weeks ago, with long division and remainders?  Well, Jack worked on that with his Dad for a long time. They were both frustrated. Finally, Jack’s Dad said, “Jack, Jack. If Lady Gaga’s new album has sixteen songs on it, and Mom said you can buy ten, how many are left over? What’s the remainder?”

“This. It can’t be done.”

“Jack,” his Dad said, rubbing his hand over his eyes. “Just tell me. How many times does ten go into sixteen?  How many are left over?”

“You can’t. Make it done.”

“Jack, please!”

“Lady Gaga’s album has FIFTEEN SONGS. Not SIXTEEN,” Jack screamed.

Autism can be very confusing; for me, for him, and probably for you.

Sometimes he takes a long time to answer a question and he sounds a little mixed up. Because for Jack, finding the right words and putting them in the right order and doing all of this in the right amount of time is very, very hard.

You have probably noticed he jumps a lot. Doctors call this self-stimulation, or stimming. We call it his zoomies. Although he has never told me this himself, I imagine Jack feels like there are a thousand ants crawling up and down his body, and the only way he can quiet their steady march is by hopping around.

The play date/party was only two hours—maybe to each of you that seemed a little short. But we made it that way on purpose, because that is about the limit that Jack can stretch himself to be friendly and make conversation, especially after a day of school. Anything longer and we worried he’d start to look like a turtle who was seeking cover beneath a hard, rigid shell.

You can’t imagine the planning that went into these two hours. Weather reports were consulted long in advance, and Jack pored over menu items like someone who wants to be an astronaut studies aerospace engineering: Jello and pizza and popcorn. He demanded we go to Hannaford’s for just the right hot chocolate and a particular brand of brownies.

(Duncan Hines, in case you were wondering. “They are the bestest. They will like them.”)IMG_6038

And the schedule! Oh, the schedule.

On my phone he created a list titled Things To Do, organizing the time into 5-10 minute increments.

“Jack. That’s a lot to do during a two-hour play—“

“PARTY!  It is a party. We need. To do things. And to see Maleficent.”

“Okay, party. Your friends are your guests, we need to do what they want to do.”

Maleficent. It is one hour and thirty-seven minutes. It costs $5.99. To order.”

You probably didn’t realize that by Friday morning, he was a nervous wreck. Awake before 6:00 am, he used a dull pencil to cross out items from the grocery list and scribble in new ones. Cookie dough, juice, cheese. On the walk to the bus stop he looked up to the gray sky overhead and sighed, “It will rain.”

And it did rain. It was cold and drizzly and so you all played a noisy game of indoor tag instead of hide-and-seek outside. At exactly 4:12, the alarm on my phone—which Jack was clutching in his hand—went off, and he started shrieking, “THREE MINUTES! UNTIL MALEFICENT!”

I breathed a sigh of relief when you each ambled into the family room and crowded onto our red couch. Maybe we’d get through this without a tantrum, with Jack’s pride intact.

But near the end, it all fell apart. I’m not sure what set him off, but when I walked in from the kitchen I saw Jack standing in the middle of the room with big tears rolling down his face. In his expression, I saw the wind and the rain and the clouds of anxiety and rigidity and autism exploding together into one big tornado.

I rushed to him. I put my arm around his shoulder and ushered him out of the room, desperate to help him save face.

“They are. Not happy. They talk all together. I can’t hear.”

I realized how overwhelmed he was, how hard he had been struggling to keep himself together for you; to smile and answer questions and keep his schedule running on time.

By the time 6:00 rolled around, Jack was curled up in a chair with the hood of his sweatshirt pulled up. He barely lifted his head as you pulled on your shoes and zippered up your jackets to leave.

And this made me feel annoyed and frustrated and protective. It made me feel sad. It made my heart feel lumpy and tired and achy.

Watching him curl tighter into himself in the chair, I wondered: will you giggle about it on the bus in the morning or smirk when he walks by? Will you tell the other kids in school that this boy named Jack is weird, he cries like a baby, he talks funny, spreading the flames of gossip like wildfire?

Will you avert your eyes when he walks down the hallway or jumps close to your desk?

Will you give him the wrong numbers if he asks you again?

Because ultimately, these are the things that keep me up at night.

But I don’t think you will do any of those things. After I closed the door after your last good-bye, I sat next to Jack and gave his shoulders a squeeze.

“That. It was OK.”

‘Yes, Jack. I guess it was.”

“Next time, for the Second Play Date/Party, we will watch Snow White.”

I sat quietly with him and thought about the past two hours, how you tagged each other out and ate the brownies and watched the movie, and when autism’s storm descended, you quietly gave my son his space. You didn’t flinch when he zoomed or tell him to stop talking about the weather report. When he needed to be a turtle, you let him be a turtle.

You were, for one hundred and twenty minutes, his friend. And that made my heart feel like it was full of a thousand colors.

 

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Jack and his friend.

 

 

Should You Meet My Children

Dear God,

I know. I haven’t been going to church very much these past few years.

In fact, in the beginning of September, my husband Joe and I made a little deal that if he went to the gym three times a week, I would go to Mass on Sunday.

Want to know how many times I’ve been to Mass? None. I’ve been exactly none times this fall.

But I do talk to you. I talk to you every single night, as a matter of fact.

Last week, I saw on the news that the daughter of a local New Hampshire family was the victim of an apparent murder-suicide. She was twenty-six.

I later learned that Joe and I had met her parents before—twice, actually—both times in restaurants. And although we chatted for a while, I’m not sure I would recognize either of them in the mall or the grocery store. I never met their daughter or even knew her name. I still don’t.

And yet I am haunted by their tragedy.

I can’t begin to get inside this grieving mother’s mind. I can’t imagine how intrusive the ordinary world must feel—how every banal pleasantry and pop song on the radio and clatter of a spoon must feel like the tiniest paper cut; stinging and smarting and distracting.

Her daughter was here one moment and gone the next. The finality takes my breath away.

She will never roll her eyes or ask her parents for money. She will never again sing, or dance, or paint her toenails with glittery nail polish.

She will never bear a child or apply for a mortgage or lick a bright purple Popsicle on a hot summer day.

My Lord, in times like this I don’t know where you are. I don’t know where to find you. And I am so scared.

In the dark hours of the night, I vigilantly imagine the scenarios: SUV’s backing out of the driveway too fast and handguns discovered during play dates. Big, round grapes lodged in windpipes and life jackets put on too late. Fire.

I sit up straight in bed, my heart racing. I think I cannot do this I cannot keep them safe what will I do if something happens to one of them. And as Joe snores lightly beside me and the bright numbers on my digital clock tick by, I pray to you.

I pray that if you must take one of mine, please—I beg of you—do not steal them from me like a thief in the night, their whispery voices barely audible above the wind. Let me say goodbye.

Please, I have to say goodbye.

Almighty Father, should you meet one of my children, please tell them I love them, that I will always love them.

Mommy loves you.

Remind them every day they are the air I breathe and the water I drink. They are my heart.

Hug them.

Please, dear Father, tell them I am sorry about the time I got so mad and yelled because they spilled their cups of milk at dinner or left Legos everywhere or made us late for the bus.

I am sorry.

Let them know if I could do it all again, I would sing every song and use play dough in the living room. I would read Good Night Moon a thousand zillion times and stop to admire every single worm on the driveway even if I hear the bus pulling up the street.

Help me, Almighty Father.

All week we’ve been trying to decide what to do about Jack’s Halloween costume. He was desperate to dress up as the female Disney character Maleficent; carefully, haltingly, he described the clingy bodice, the long nails, the knee-high boots.

“Her boots. They are long. And to be black. So I stand taller.”

Week after week, we brainstormed. How about King Stefan instead? Or Diaval, the sleek, feathered raven? We switched tactics and offered alternatives to the Sleeping Beauty theme altogether; the bright yellow minion from last year—crumpled and stuffed into the costume bin upstairs— or a Minecraft figure, even something as silly as a banana or a jar of jellybeans, with a clear plastic garbage bag and some colorful balloons.

“No. It has to be. Maleficent.”

Nearly once a week Jack tells me he does not want autism in him. He does not want to be different. The way this makes my heart ache is nearly indescribable.

And for some reason this Halloween thing really threw me for a loop. I think it’s partly because I knew neither Target nor Party City sell masks or capes or wigs that adequately captures what Jack really longs to be: normal.

As Halloween approached, I was tempted to throw in the towel on the whole argument and let him wear whatever he liked. After all, Halloween is a night of fantasy and imagination; a chance to recreate yourself.

And when I read the news of the twenty-six year old girl, I felt even more compelled to let it go, to buy him the tight dress and the shiny boots and hope for the best. Because, Almighty Father, there is life, and there is death, and then there are costumes. And on the continuum, made-up outfits you buy from Wal-Mart seem pretty unimportant.

Yet I couldn’t let it go. If anything, I was reminded once again that life on this earth is fragile. It is precious. It is worthy of our full attention and mindfulness, even when it comes to a 10-year old boy on the autism spectrum who wants to dress up like Angelina Jolie. Or maybe especially when it comes to a 10-year old boy on the autism spectrum who wants to dress up like Angelina Jolie.

So in the end, we found some middle ground—a version of Maleficent that felt right for me and for Joe and for Jack and for autism.

We compromised on the cleavage-baring gown and opted for a black turtleneck and fleece pants. We traded the tall, high boots for comfortable sneakers instead. Online we found long, feathered wings and a tall staff.

After school he raced up the driveway and exploded in the house, breathless and vibrant. After his usual snack—pretzels and a cheese stick—he went upstairs.

About ten minutes later, he came back down, agitated. The wings weren’t quite right because he’d put them on upside down. We fixed and adjusted and eventually took them off and flipped them over.

“Yes,” he said, standing tall in his bright blue sneakers. “This is it. This is for me right.”

I coaxed him out on the front porch to take his picture, and looking at him with the bright fall leaves in the background, I found you. My Lord, I found you in my son’s downcast eyes and his quiet, excited smile.

At last, I understood your message; for all of eternity there will be love and loss and pain and fear. There will be grapes to cut and life vests to pack and sadly, there will be guns fired at will.

But there will also be songs to sing and books to read and large, ice-cold glasses of milk for dunking cookies. There will be popsicles.

Right then, I decided there is no heavenly message I can’t deliver myself here on earth.

Every day, I can tell my four boys and one girl how much I love them, how they are my very heart.

I can tell them I am sorry.

I can tell them that yes, the worms are squiggly and long, but the bus is waiting.

I can tell them. I will tell them.

And my Good Lord, I will see you in the tiniest of moments; moments of clarity and color and big, majestic wings pointing to the sky. Moments when I watch the neighborhood kids wander up my driveway and I look at all the costumes—minions and morph suits and witches and firemen and even one banana—and I realize my son did what I could not.

He came up with a way to feel normal.

Standing still with Jack on the front porch after I’d taken his picture, there were a lot of things I wanted to say. I wanted to tell him looked so happy and I was so happy and his costume was spectacular.

I wanted to tell him that normal means nothing, even if some days it seems like it means everything.

But instead I just said, “Jack. I am proud of you.”

“Yes. Yes. I am Maleficent.”

Dear God, thank you.

In love and faith,

Carrie

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Let’s Change the Conversation

“Mom!” Rose cried last Thursday afternoon. “A boy on the bus told me I look fat in my new coat. He said I look pregnant!”

I stared down at my 7-year old daughter where she stood, holding the offensive navy blue coat I’d just bought her from Lands’ End out like it was a hand grenade.

She just got her ears pierced, I thought absurdly. How can she look pregnant?

“But Rose!” Henry interrupted worriedly. “He say that to everyone! He say that to me too!”

I knelt beside her and stroked her hair. Her face was bright pink.

“Rose, honey, we don’t have to worry about that stuff. We’re Watterson girls!” I told her, referring to my maiden name. “We’re tall, and, well, we’re not fat!”

The minute I said that, my own inner fat girl began to shriek and giggle and gasp for air.

Yes, I have an inner fat girl, and from time to time I feed her. Not with spaghetti or Oreos or candy—although I do that, too, on occasion—but with my confidence, my security, my pride. She shreds each like a piranha.

She likes to say things like, Really? Leggings on those thighs? Or I would stay away from those cookies if I were you!

I remember exactly the day she came to life. I’d gone to visit my grandmother, who was in the last stages of lung cancer and under my aunt’s care at home.

Always incredibly thin to the point of being frail—most likely from years of feeding her inner nicotine and white wine girl—my grandmother had a sharp tongue and a biting wit. And I loved her for both.

But on this day, the very day I went to say goodbye for what turned out to be the last time, I sat down next to where she lay on the couch. With her long, skinny frame and short salt-and-pepper hair, she looked a lot—and I feel badly saying this, I really do—like a cigarette.

As I lowered myself on the cushion near her head, my fragile little grandma—weighing, I don’t know, maybe 80 pounds at this point—rolled towards me, almost sliding right off onto the floor.

And then she said, “You’ll always be a big girl, Carrie.”

I’m not sure how much I’ve told you about Rose, but she’s just about the most specialist person in my world. She loves to bake with me, to measure and pour and mix. Her favorite recipe is chocolate chip biscotti and her favorite meal is steak.

She has the most adorable little bob haircut, and at night after her shower, her damp hair curls up around her smooth, soft cheek. She is at once serious and funny, gentle and strong.

Fat? How can we be having the fat conversation already?

I mean, we’re talking about a girl who tapes handwritten notes up all over the house with words like love and family and big, colorful hearts. IMG_5917

A girl who, every day after school last year, waited until her big brother Jack got on the bus and then walked over to his paraprofessional to ask, “Did he have a good day today?  Was he happy?  If he gets upset, you can come and get me. I know how to help him.”

“Because,” she’d say. “I understand his autism.”

And I know this boy from the bus. He is a funny, sweet, goofy little boy. I know his parents. They are lovely and friendly and kind.

In fact, I was nervous about sharing this post because I didn’t want anyone leaving negative comments about how unkind kids can be; this isn’t about bullies or mean girls or the downside of riding the bus. It’s about changing the conversation.

I want to change the conversation.

Over the weekend Joe and I saw Fleetwood Mac perform. And in the middle of the show, Stevie Nicks told a story about living in San Francisco when she was in her twenties—playing in a small band and opening for big names like Janis Joplin and Jimmy Hendrix—and one day she walked into an expensive store called the Velvet Underground, where all the rock-n-roll stars bought their clothes.

She described how, standing on the beautiful hardwood floor, she had a premonition; an inner voice who told her that something big and exciting was going to happen to change her life. And she was going to be able to afford to buy everything in the Velvet Underground if she wanted.

Her story eventually inspired Fleetwood Mac’s chart-topping song Gypsy.

Sitting in the darkened arena, I thought again about inner voices, and how they can control us and berate us and hold us back, or they can inspire us and propel us forward.

I mean, Stevie Nicks did not walk into the Velvet Underground and think to herself, I won’t be able to fit into any of these clothes I am so fat Janis Joplin is thinner than me I never should have had a muffin for breakfast muffins aren’t Paleo.

No, she thought I don’t know how or where, but I am going to be something one day.

Here’s the thing; I can’t promise that one day Rose won’t gain weight. Maybe she’ll break up with her first love in college and console herself with Ben & Jerry’s for a while. Or maybe she’ll have a baby and have trouble taking those last few pounds off.

And I can’t promise someone won’t say something unkind to her. People are mean and girls are mean and Facebook is mean and sometimes, the world is mean.

As much as I would love to, I cannot wrap this precious child of mine in protective bubble wrap or drive her to school every day. I cannot accompany her on the playground or to middle school dances or her dorm room in college any more than I can cover the issues of Cosmo or Shape or People Magazine while we stand in the check-out line at Target.

I can only change the conversation in her mind, the voices that chant you are not thin enough you shouldn’t eat that don’t wear that why do you look like that. I can only change the music in her ears to quiet the buzzing white noise so she may inspire and be inspired.

I haven’t figured out how to do that just yet, but I do know one thing: I’m not going to tell her she’s skinny or reassure her she’s not fat. In fact, I’m going to take it out of the conversation altogether, because it just doesn’t matter.

In the meantime, I’ll just keep doing what we did last Thursday afternoon. I will bake a big batch of chocolate chip biscotti and let measure out the sugar and crack the eggs, and when they’re in the oven we’ll take turns licking the beater.

I will tell her that her new winter coat brings out the bluest of her eyes.

For dinner, I will make her favorite steak with broccoli and rice. I will make Jack’s favorite crescent rolls and let them each take a turn rolling out the soft, white dough.

And then, I will sit back and watch her four brothers unintentionally work their magic. I will watch as they remind Rose she is a sister among brothers; a flower surrounded by tall, strong trees.

“But. How. Can you be fat?” 10-year old Jack asked quizzically. “The bones. In your legs. They show.”

“Rose,” 11-year old Joey promised. “We will take care of this.”

“Listen,” 8-year old Charlie reassured her around a mouthful of food. “It doesn’t matter what people say. Just don’t listen.”

“Ro-ro,” 5-year old Henry shouted across the table to his sister with his special nickname. “If it happens again, I walk straight to Mistah Munsey’s office and tell him. Because Mistah Munsey? He say he will talk with you family if you rude.”

Just like that, they changed the conversation.

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This girl.

Marriage is Weird

Last week I was flipping through some magazines at the salon while I waited for my hair to turn blonde, and I came across a quiz designed to help you figure out if your marriage is something called sustainable. It asked you to describe how you knew when your spouse was the one, and then asked you to answer a bunch of questions with always, often, occasionally, or never.

Here is an excerpt of a few questions with my answers:

  • We frequently discuss issues and when we do, the manner in which we discuss issues is completely respectful and not harsh.

(Um, I don’t have an answer for that.)

  • When I reflect upon the fact that I chose to marry the person I did, I feel such peace.

(Yes, peace. Nothing but peace.)

  • My spouse rarely does or says things that frustrate me.

(Always. I mean never. He rarely never does anything to frustrate me.)

  • Although we have our own opinions about many topics, it is rare for my spouse to say or do things that make me truly angry.

(Uh huh. If you say so.)

  • I frequently talk with my spouse and discover new or interesting facts about him/her.

(Yes! Just the other day he came home and told me he bought 297 bars of Irish Spring at Costco.)

 Marriage is sort of weird, isn’t it?

I mean, I knew Joe for a little over two years when he asked me to marry him. I said yes, and we agreed to spend exactly, oh, I don’t know, the rest of our lives together.  We were in our early twenties, so the rest of our lives could easily translate to sixty years or more.

In other words, what were we thinking?

Joe proposed on Easter Sunday in 1996. We’d driven home from college together and then went our separate ways—he to a big, boisterous holiday with a thousand kids and some weird dish called Easter pie, me to a quieter house with just my mother, brother, and sister.

Throughout the day, my mother henpecked and interrogated, demanding when—if!—he was ever going to propose. She used expressions about buying cows and drinking milk and getting things for free.

So, on the ride back to my apartment, I picked a fight with him. I couldn’t bring myself to ask if he was going to propose anytime soon, so I basically wheedled and complained about everything except the issue of commitment.

By the time we walked up the dank stairwell into my apartment, we were barely speaking. He followed me into my small bedroom behind the kitchen, and I burst into tears.

“It’s just my mother said you’re never going to ask me and I can’t wait any more!”

“Fine,” he said disgustedly, taking a small box out his pocket and tossing it onto the light green bedspread. “Here it is!  Will you marry me?”

If that isn’t the most romantic story you’ve ever heard, well, I don’t know what is.

I never really told anyone this. For years afterward, when people asked how we got engaged, I just smiled and said breezily, “Oh, you know, he asked me in my apartment.” I did it in a way that suggested fairy tale proposals were passé, that we were too serious and in love to be bothered with roses or candles or beguiling questions stuffed into fortune cookies.

But really, I felt embarrassed and ashamed. Secretly I worried a proposal born out of an argument was probably not the most auspicious start to a marriage.

A year later we took Pre-Cana; classes the Catholic Church require before you walk down the aisle towards the altar. Every Tuesday for a month, we met with a group of similarly engaged young couples to talk about religion, holidays, and how many kids we thought we’d have.

(He thought we’d have four kids, and I was planning on two, in case you were wondering.)

The petite blonde leading the discussion counseled us to avoid keeping score in our marriage, that it was unproductive and unkind.

Oh, yes, I nodded my head sagely. No score keeping. Keeping score bad. Love good.

I’m pretty sure on the way home from that particular Pre-Cana meeting, I complained that I did the dishes more than he did.

These are the things I didn’t know about Joe until after we got married:

  • He loves buying things in bulk.
  • His favorite holiday is the Fourth of July.
  • He gives the silliest presents.
  • He snores.

This past summer we had a big argument. Over spinach. I know, right? We were finishing up dinner with the kids, when 8-year old Charlie said he couldn’t finish his spinach because he was full.

“No, Charlie I think you can finish it. Come on, just a few more bites,” Joe said.

“Ok buddy, but no ice cream,” I interrupted.

“He’s eaten it before, let him finish it.”

I looked at Joe. “I think he’s done, it’s not a big deal.”

Slowly the other kids got up with wary expressions and brought their dishes to the sink. Charlie stayed behind, pushing his lump of spinach from side to side while he waited for the verdict.

Two months later, when I look back on the disagreement, I can almost add subtitles to our exchange.

“No, Charlie I think you can finish it. Come on, just a few more bites.”

(I’ll handle this, he takes advantage of her too much.)

“Ok buddy, but no ice cream.”

(Who does he think he is? I cooked the meal, I can decide who eats it.)

“He’s eaten it before, let him finish it.”

(Why are you interfering?)

“I think he’s done, it’s not a big deal.”

 (Stop making a big deal about it.)

“I don’t like to make an issue about food.”

(My father used to make us sit at the table for hours until we ate every last bite and I hated the way that felt.)

“Carrie, I’m not making an issue about food.”

(I know this is about your having to sit at the dinner table and finish the ketchup off your plate when you were little but that’s not what this is he’s fine he can eat it he likes spinach stop letting him play you.)

It doesn’t take an advanced Ph.D to see it wasn’t about green, leafy spinach at all—it wasn’t about Charlie’s nutrition or wasting food or ice cream for dessert.

We were keeping score.

Phoebe once told me that marriage is the art of combining your DNA and RNA—essentially, genetics and memories and experiences and perceptions and behavior—with your spouse’s DNA and RNA. Like flowers growing together in a wild and colorful garden, you can either make room for the brilliant yellows and reds and purples, or you can let the wily weeds of resentment and bitterness and anger prevail.

These are the things I know about Joe now:

  • He cannot tolerate traffic.
  • He is easily the most forgiving person I have ever known.
  • He is quietly funny.
  • He is happiest when he’s with the four children he planned to have and the one he didn’t expect.

How would I describe our marriage? I would describe it as good. Aside from my children, it is the single most important relationship in my life.

Are we happy? Most of the time. As the years tick by on the calendar, we seem to learn how to tick each other off less and less.

At this point, I’m nearly certain we’ll come to the end of our lives together. Oh, there will be heartbreak and tears, frustration and fiery arguments. There will probably be disagreements over parenting and vegetables; again and again our resolve to prune and tend and weed will be tested.

But somehow, we will figure out how to make my memory of ketchup and his desire for mealtime order grow alongside each other, like two flowers blossoming in the warm summer sun.

I think that’s what the magazine meant by sustainable.

These are the things I know about marriage now:

  • Even the most unromantic proposal can turn into a good marriage.
  • Keeping score is unproductive and unkind, but oh-so-tempting to do.
  • Marriage is ordinary, extraordinary, and most importantly, it is ours.

As for the first part of the quiz—where it asked when I knew Joe was the one for me—well, I didn’t fill it out. The truth is, I never had a light bulb moment–an exact second in time when I knew  that I could marry him and no other.

But still, I know it.

I know it every time I reach into the linen closet for a new bar of soap. I know it every Fourth of July, when he rummages through our messy garage to find the extra-large headphones so Jack can tolerate the loud boom of the fireworks. I know it every time I look at my engagement ring, with its small ring of diamonds around a sapphire.

And I knew it one hot evening this past August, when I stood at the sink scraping Charlie’s spinach into the garbage disposal, and Joe sidled up next to me with a small smile.

“Tomorrow night, let’s just have corn instead.”

Costco trip.

Costco trip.

Maybe, if You Ask Me

Lately I’ve been reading a lot of blog posts about things you shouldn’t ask people; the top ten things you should never ask a new mother and questions no special-needs parent wants to hear and the worst things to ask about autism.

But I want to tell you something. You can ask me anything.

If Jack was some sort of prodigy—which he is not; he does not play the piano with a flourish or contemplate chess matches or solve long, complicated algorithms—but if he was, people would flock to me and ask all sorts of questions about how long he practices, where we go for tutoring, how many tournaments he’s won.

Why should autism be any different?

Every year we have a party on Halloween. Well, not exactly a party, but more of an open house for all of our neighbors, with pizza and snacks before all the kids rush out into the dusky twilight to trick-or-treat. We started it when we first moved here about seven years ago, ostensibly so we could get to know the people who lived on our street.

But I have to admit, we really started it for Jack.

We started it so other kids in the neighborhood could meet him in the place where he’s most comfortable; his home.

I wanted them to see his wall of license plates and taste the chocolate frosted brownies he arranged and re-arranged and arranged again on a pumpkin-shaped platter. I wanted them to become a little more familiar with his robotic, Arnold-Schwarzenegger voice.

Then even if they don’t really know what autism is, hopefully they’ll know Jack a little better. They’ll know that he doesn’t really like playdates, but he loves Halloween. They’ll know he doesn’t always meet their eyes, but that doesn’t mean he isn’t listening.

And maybe they won’t point or jeer or whisper as much when he stims down the center aisle of the bus, flapping and grunting and jumping before settling into his solitary seat. Maybe one of them will wander over during recess for a quick hello before they race back to their huddle of friends.

Over the years, I’ve learned that if I want to make Jack comfortable outside, I’m going to have to let people inside.

Jack wants to be Maleficent for Halloween this year. You know, the wicked villain played by Angelina Jolie? With the big black wings and bright red lipstick? Yeah, her. My son wants to dress up as the evil queen from the story of Sleeping Beauty, and I have absolutely no idea what to do about it.

He’s different enough already, you know? I mean, he’s ten and his favorite thing in the world is to make long, illegible lists and go grocery shopping with me on Saturday afternoons. He skips down the aisles comparing brands and muttering about protein. When we get home, he organizes the snack pantry.

He can be hard to understand. It’s not a pronunciation issue, as much as his sentence structure is usually a little bizarre; “Pizza for me is tastes good.”

Lately, throughout the day, he puts the two middle fingers of his left hand in his mouth and, with his other hand curled into a fist, bangs on his right hip while he bends over rapidly at the waist six, seven, sometimes eight times.

All of this is the norm of my day, the steady tympani of my background noise. But it doesn’t exactly help him connect with his peer group.

Add to that a fifth-grade boy waltzing around the neighborhood in tall black boots and a wig fashioned into horns? Well even a Halloween party isn’t going to stop those whispers.

But on the other hand, odd is good, right? We collectively cry “To each his own!” on Facebook and Twitter and Instagram. We celebrate uniqueness because no one wants to be cookie-cutter; no one wants to be exactly like another.

But this is not social media or a picture someone photo-shopped and posted online in soft shades of sepia. This is not a game.

I mean, I never thought autism was a game. But there are days when I feel like we are little more than pawns on a chess board. I try and get Jack to work on flash cards, and all the while autism’s symptoms leapfrog over one another. Silently, we race to declare checkmate.

And the stakes are so very high.

I need you to see him. I need you to help me bring the pieces on the board to life so I don’t reduce him to a match of gains and losses, forward steps and backward slides. He’s talking he’s talking now he’s stopped sleeping he’s riding the big bus but he always sits alone he decided to wear a costume only he wants to dress up as a woman.

If you ask me, then you will know.

You will know I have no answers and I am usually pretty confused. You will learn I am scared. You will understand our dilemma of gender identity and a boy who would rather grocery shop than jump in a tall pile of leaves on a beautiful Saturday afternoon.

Who knows, maybe I’ll run into you in Hannaford’s or the library or the mall, and maybe you’ll ask me what Jack’s going to be for Halloween. And then I’ll say, “He wants to be Maleficent. You know, from the movie?”

Maybe you’ll say, “I don’t know, that seem like an unusual choice for a 10-year old boy with autism. Aren’t you afraid he’s going to stand out too much and kids will make fun of him?”

If you say this, I will nod my head and agree. Because that’s exactly how I feel about it.

Or maybe you’ll say, “Who cares? Let him be what he wants. There is no such thing as normal anymore. He’s happy, and that’s all that matters.”

And if you say this, I’ll nod my head and agree. Because that’s exactly how I feel about it, too.

But maybe you’ll suggest I ask Jack why he wants to dress up like a female Disney character with big fake nails and feathery black wings.

Maybe you’ll remind me that, although he does not appear to be an expert in chess or a genius at tickling the ivories, he is still a prodigy in his own right.

He is a prodigy of his autism.

So after dinner one night, I will ask him. “Jack, why do you want to be Maleficent for Halloween?”

He will bow his head, almost as if in prayer, and hesitate for a second. But instead of praying, I realize he’s disappearing inside himself; bending closer to hear autism’s soft, compelling whisper, as familiar to him as his own heartbeat.

“Jack,” I call him back to me. “Why. Why Maleficent?”

And in our quiet kitchen, with the lights turned low and the smell of garlic bread hanging heavy in the air, he will say, “Because. I do.”

“But what do you like about her?” I will press.

And in his unusual syntax, he will answer. “Because. She comes bad. And then she is gooder.”

When he says this, I will feel sad and depressed and confused. But I will also feel a little sliver of hope blossom inside of me like the tiniest seed.

For weeks now, Jack’s perfectly described the villainess—the tall black boots and the crimson lips and the tight-fitting dress—but he doesn’t have the words to tell me what he really likes about the character, what he really admires.

Change. 

And just like that, the tall, cool queen glided into her place on the chessboard. Maybe not a win exactly, but definitely some sort of victory.

Sitting in my kitchen, watching him tap his fist on his hip and bend over at the waist six, seven, eight times, I still didn’t have an answer. I don’t know if we’ll let him dress up as Maleficent or encourage him to choose something else.

But I am glad I asked.

Last year he was a Minion, which was so much easier.  No one knows if Minions are boys are girls.

Last year he was a Minion, which was so much easier.
No one knows if Minions are boys are girls.

 

 

Mistah Munsey

“Rose!” five-year Henry shouted, dropping his blue backpack on the floor. “Let’s go upstairs! I be Mistah Munsey and you be Mrs. McCarthy.”

The two of them linked arms and made their way to the playroom, singing some song about a flag at the top of their lungs.They sounded like two drunken sailors just home from a bender, but in fact they were a second-grader and a kindergartener just home from school.

Last spring, I wrote here all about Henry going to full-day kindergarten. Or, more precisely, Henry not going to all-day kindergarten because the coveted K+ section in our school district was full, and he didn’t get a spot.

But at the last second, right before I wrote the check to military school and sized him for a teeny-tiny uniform that would fit comfortably around his chubby belly, our district opened another section of K+, and for the first time in my life, I understood the meaning behind the phrase Christmas in July. Or May, because that’s when they called to tell me, but whatever.You know what I mean.

But even after all of that, it was very bittersweet to see my youngest board the bus when school started. For the first time in eleven years I was without infant, toddler, or pre-schooler. And almost two months into the year, the house is still too quiet at times.

That is, until they all get home.

Henry, in particular, is very exuberant. Kindergarten is very, very exciting for him. All week long he swaggers through the house, delivering information and giving tours.

“Now, children, this is the CAFETERIA. Where we get FOOD. Mrs. Zimmerman’s class, please LINE UP!”

He stands in the hallway and pretends to talk in an intercom.

“Turn you voices to OFF! Then you get a STAR! And you will win a PIZZA PARTY!”

But he is especially attached to the Vice Principal, Mr. Munsey.

At dinner, it’s Mistah Munsey this and Mistah Munsey that. One night he suggested, “Mom. You need to marry Mistah Munsey. He can marry you and you can marry him.” I told him I was already married, and he looked up from his plate and shouted, “You ARE? To WHO?”

“See, Henry, that’s why we send you to kindergarten,” 11-year old Joey said wryly. “So you can learn some things.”

“I learnin’! Because Mistah Munsey, well, he showed us the art room and he has keys and well, everything. You know, Miss McCarthy is the principal, but Mistah Munsey is the REAL PRINCIPAL. Because it has VICE in it.”

I can’t say I know Mr. Munsey well, but he’s always struck me as very kind. A young father with three small sons of his own, he has dark hair and an easy smile.

We’ve started to call Henry Mr. Munsey, and sometimes, the Vice Principal.

“Come on, Mr. Munsey. Time for dinner!”

“Can you make sure the Vice Principal put his pajamas on?”

“Mr. Munsey needs to cut his fingernails!”

Last week, 8-year old Charlie told me he forgot to finish his spelling. I asked him if his teacher, Mrs. Blaine, got mad. “No, she never gets mad. And if she does, she just goes right back to being happy again. She’s always happy and she makes things so fun.”

I smiled brightly and said, “Well, she sounds a lot like me!” He looked back down at his worksheet and shook his head. “No, Mom. She’s nothing like you.”

I felt the smile fade from my face, and my eyes narrow. In a voice that was eerily reminiscent of Miss Hannigan from Annie, I told him, “Finish your homework and try not to forget anything this time.”

A few hours later I slicing some carrots at the counter, and 7-year old Rose walked into the kitchen, “What are we having for dinner, Mrs. Cardin? Whoops!  I mean Mom! I meant to say Mom!”

“You really like Mrs. Cardin, huh?” I asked, smoothing her blond bangs back from her face.

“Oh, I do! I just love her! And, well, I don’t want to hurt your feelings or anything, but Mrs. Cardin has four daughters so she really understands girls, you know? She just gets me.”

For the second time in a single afternoon I felt the smile fade from my face and my eyes narrow.

“Chicken,” I said, sounding just like Betty Draper in the third season of Mad Men, when she knows for sure her husband Don is cheating on her and she’s completely disgruntled with her life. “We’re having chicken for dinner.”

In his usual stalker fashion, 10-year old Jack’s memorized the make, model, and year of his teacher’s car, as well as her exact address. After he asked if he could use Google Map to look up her house, I made a mental note to e-mail her and suggest she not give out any more personal details, because autism often knows no boundaries.

I took Henry to Old Navy for a few new shirts now that the weather is getting cooler. As soon as we walked in, I scooped up a handful of long-sleeve t-shirts in a bunch of different colors. “No!” he shrieked so loudly that I jumped. “I need the other ones! With buttons! Like Mistah Munsey wears.”

“Maybe,” I teased Joe one night after another Mistah Munsey dinner marathon, “It would help if you weren’t such a deadbeat dad.”

“Yeah, that’s it,” he smirked as he loaded dishes into the dishwasher. Just then Henry ran into the kitchen with a cape on, hollering, “Dad! You be Batman, I be Robin tonight!”

But it is an interesting point. Why is Henry so fascinated with the Vice Principal? He certainly gets his fair share of attention from Joe; in some ways, as the youngest child, more than the others.

Last year, I would try to squeeze in my workout before Joe left for work. He handled the morning bus routine while I went to the 7:00 Crossfit class, and most days I’d walk in the door and find the two of them snuggling on the couch reading or sitting together in the office; Henry nestled on his father’s lap while Joe typed or organized paperwork.

On Friday morning, I rolled over and looked at the clock: 6:20. Down the hall, I could hear Jack open his drawers and Wolfie thumping his tail against his crate.

“Well,” I said to Joe. “I’d better go get Mr. Munsey up.”

I walked into his room and knelt next to his bed. He was snuggled under his favorite blue blanket –the one he calls his ya-ya—and I could only see his head and his round face. Just as I leaned over to kiss him good morning he sat upright, looked around, and shouted, “I late! I goin’ to be LATE FOR WORK!”

I helped him picked out his shirt—“With buttons and lines on it! Like Mistah Munsey wears!”—and we went downstairs. While Jack fussed for waffles and Wolfie waited at the door, I poured him a bowl of cereal. He seemed quiet, subdued.

“What’s up, Henry? Wolfie got your tongue?” I teased.

“I just thinkin’,” he said, his eyes fixed on his spoon. “When I at school, I miss my dad.”

For the third time in as many days, the smile faded from my face. But instead of narrowing, my eyes filled with tears.

“I know you do, buddy. I know.”

As I turned to help Jack pour the batter into the waffle iron, I thought about my five-year old marching off to kindergarten every morning. I thought about how loud and confident and boisterous he seems. How, at first glance, it was as though he got on that big yellow bus and never looked back.

But in fact, he is still adjusting to the big wide world of school, to a day full of fire drills and pizza parties, art class and intercoms. Maybe, when he looks out into the hallway and catches a glimpse of a dark-haired man with a kind smile, he’s reminded of the dark-haired man with a kind smile who plays Batman to his Robin and reads to him in the morning and wraps his precious blue ya-ya around his shoulders when its time for bed.

Because all this time, underneath the long-sleeve shirt with lines on it, is a little boy who just misses his dad.

IMG_5635

How to Get People to Change the Toilet Paper

“You guys should definitely check out the Deerfield Fair tomorrow,” our server told us on Saturday night. “Just get there early so it won’t be too hot.”

Giddy and stupid from a pomegranate martini, I turned to my husband Joe and exclaimed, “The fair! Let’s get up early tomorrow morning and take the kids. They’ll love it.”

So, folks, I wanted to share with you about our day with five kids and autism at the fair. For organizational purposes, I decided to break it up into two versions.

This is the Facebook/Twitter/Instagram version:

I woke early and bounded out of bed. I took our puppy, Wolfie, for a short walk, and while the kids watched a little TV and Joe showered, I selected coordinating outfits from their drawers so we could keep track of them in the crowd. Their drawers were kind of messy, and I made a mental note to review the importance of staying organized with them.

As soon as we walked in and smelled the roasted peanuts and warm pretzels, I remembered just how much I love fairs. The food! The Ferris Wheel and the interesting people!

We giggled about how the seven of us have no problem getting to a fair three towns over by 8:40 on a Sunday morning, but we struggle to make 9:00 am Mass ten minutes from our house. Tee-hee! We were a funny, special family.

Despite the heat and the crowd, we experienced moments of gratitude, small spotlights of appreciation in the midst of a busy outing.

Fun, right? Now I’ll tell you the real version.

I rolled over in bed as soon as I heard Wolfie whimpering in his crate. It was 6:02. Joe was snoring, and I had a headache.

I rifled through each of their drawers, which were a disaster; shirts and shorts and socks tangled up into balls. I found a spoon buried under five-year old Henry’s underwear.

I walked into the bathroom all five of them share, only to notice someone didn’t flush the toilet. Even worse, there was no toilet paper because for some reason no one in my house can change a single roll independently.

I swore a bunch of colorful curse words and made a mental note to yell at them later.

Determined to still have a nice morning and surprise the kids with a spontaneous trip to the fair, I took a deep breath and called them all together in the family room.

“Hey guys! Guess where we’re going this morning!  To the fair!”

“Aw, that’s not fair. Get it? Get it Joey?”

“No. No fair. I hate fairs.”

“Jack! Do not say ‘hate’. Say ‘I don’t care for fairs’. I put out all of your clothes – we need to wear the orange shirts.”

“What? No! Why! Why do we always have to match?”

“Because,” I said slowly, deliberately. “I don’t want to lose any of you in the crowd. That would be a doggone shame.”

“Why you voice all funny?” Henry shouted.

Forty-five minutes later, we pulled into the grassy parking area. We walked in, giggling about how much easier it is to get to a fair than church, and settled in for some breakfast sandwiches.

But as usual, it didn’t take long for the wheels to come off the bus.

I use this phrase a lot. But I want to take this opportunity to explain that, in our family, the wheels don’t just come off. They blow off. It is fast and it is furious, and very unpredictable. This time, it started with Diet Coke.

While Joe ordered seventy-nine sandwiches and I ushered the kids towards an empty picnic table, Jack spied a bottle of Diet Coke in a big cooler of beverages. And he started to chant.

“Diet Coke, Diet Coke, Diet Coke.”

“No, Jack. You are not getting a Diet Coke.”

I have no idea why he would want Diet Coke. We have never given him Diet Coke. To my knowledge, he has never even tasted Diet Coke. In fact, he doesn’t even care for soda all that much.

But there we were, in the middle of one of the state’s largest fairs, with throngs of people threading around us while my son with autism screamed, “Get me Diet Coke or I will. DIE!”

“Jack,” I whisper-screamed in his ear. “Stop it or I will bring you to the car and we will leave.”

“Ok. That is good. To leave.”

“Oh no, Jack,” Joe said firmly. “We are not leaving. Settle down.”

Joe and I tend to lapse into this weird good-cop, bad-cop routine on family outings, except our routine is disorganized, unplanned, and completely lacking in purpose.

Joe:        “Come on, let’s get them ice cream.”

Me:        “Enough with the ice cream already! It is 10:30 in the morning and we just had doughnuts! They do not need ice cream.”

Fast-forward exactly eleven minutes later, when I was standing in the line for French Fries. I bought a huge order that for some reason came in a bowl resembling a dog dish.

“I thought you said they didn’t need anything!  Why are you getting French Fries?” Joe asked when I wandered over to him, balancing a cardboard cup of cheese on top of the hot fries.

“I don’t know,” I answered defensively as the kids surrounded me like a pack of wolves. “Let them have some treats, we’re at a fair for heaven’s sake. Here, try one, it will put you in a better mood.”

He glowered at me.

Now, it is true that we’ve been working on gratitude with the kids, and encouraging them to take a quiet moment in the middle of a busy day or activity to give thanks and appreciation. But this time, the moment of gratitude looked like this:

Me:        “Get over to that bench and sit down THIS MINUTE.”

Them:   “Why? We’re hot/thirsty/hot/hungry can we go on the Ferris Wheel again how many tickets do we have left when can we get cotton candy?”

Joe:        “You guys are in for it now.”

Me:        “Everyone needs to sit here for a minute and think about how grateful we are to be here. Stop asking for things constantly. It’s annoying! I mean, why would we bring you anywhere? Your drawers are a mess and this morning there was no toilet paper in the bathroom again. How hard is it to change the toilet paper roll—“

Them:   “I told Henry to do it I did change it but it fell in the toilet this fair is fun I’m hot I’m trying to be grateful can we see the cows soon those llamas were weird.”

Jack:      “I want. A Diet Coke.”

Joe:        “What Mom is saying is be happy for what you’re getting today. It’s a special treat to come to something like this.”

They grumbled their apologies and we trundled over to the rides. Gratitude over.

While we waited on line for the large slide, Jack positioned himself next to the sign listing the ride’s rules and proceeded to read them at the top of his lungs.

“No SMOKING on this ride. No one with a HEART CONDITION. No PREGNANT WOMEN.”

He cast a disparaging eye down the line and rested his gaze on a woman who was, well, a little on the rounder side.

It was as if, for one tiny second, I could see inside his actual brain. I could see the neurons and synapses firing, autism racing non-autism down to Jack’s vocal cords and out of his mouth; racing and sprinting and throwing elbows to the finish line.

It looked hopeful for a second. Jack hesitated and he appeared to be thinking, considering, deciding. And then autism pulled ahead and reached for the win.

“She CAN’T—“

“Jack,” I warned.

“WHAT? You can’t be PREGNANT for this ride. It is the RULE.”

At that moment, I desperately wished we’d bought him that Diet Coke.

By this point it was about 900 degrees, and the place was teeming with strollers and toddlers and people eating enormous turkey legs wrapped in tin foil. After we spent five minutes looking for Henry only to realize he was actually holding my hand, we decided it was time to head out.

And through the crowd we weaved once more, through the sticky, hot midway and out into the open parking lot. As soon as we all sat down in the car they all started to talk.

“That was so much fun! Can we go to Disney?”

“Yeah! Disney! That would be awesome!”

I opened my mouth to tell them no way, we were never leaving the house again, when out of nowhere Joe good-copped me.

“Disney is definitely on the list. Now let’s count all the cars we see waiting in line!”

This pretty much sums Joe and I up when it comes to the kids; I get aggravated over the little, day-to-day things like toilet paper and unfolded t-shirts and rules, and he teaches gratitude and spontaneity. He teaches that we don’t leave the fair just because someone is throwing a tantrum about soda.

He steps in when I am finished, and, most importantly, he lets me have the French Fries when he really wanted ice cream.

Joe is big picture and I am little picture, and together we paint our picture. Together, we will figure out how to get them to change the toilet paper and appreciate treats and use nice words. It just might take a while.

The kids all clapped and cheered and started to count. Just then I heard a little voice that may or may not have been in my own head.

“Yes. Yes. In Disney. There will be Diet Coke.”IMG_5626

This is How I Feel About Forty

About ten years ago I watched an episode of Dr. Phil that changed my life.

Well, maybe not my life exactly, but it changed a lot about how I feel about myself, which for most women is pretty much the same thing.

Dr. Phil was talking with a young couple who were about to get married. The woman was really, really pretty—slender with long legs and a short skirt—and she was worried that as she got older her fiance wouldn’t be attracted to her anymore, that he wouldn’t think she was beautiful. She complained he noticed other women.

Well, this is going to be good, I thought to myself. I had been nursing Jack in our old blue recliner, and I settled back into the chair and waited for Dr. Phil to light into the guy and tell him to straighten up, that he had a beautiful girl in front of him and he should stop admiring women who walked by him on the street or in the store.

But he didn’t.

Instead, Dr. Phil turned to the beautiful young woman, and in his Texan drawl he said, “Girl, there is always going to be someone prettier than you out there.”

After that episode, every time I felt fat or ugly or insecure or old or whatever, I thought about that line. There will always be someone smarter and prettier and thinner and younger than I am, so I might as well just get over it and get on with it.

Yesterday I turned forty.

When I think about being forty, I feel a combination of giddiness and relief and joy. I feel as though I am finally here, like I have arrived at some long-awaited destination.

This is my body and this is my face. My feet are long and skinny and my second toe is bigger than my first. I don’t like peas and my favorite color is bright pink. I like to exercise in the morning and I can’t pass up a video about dancing flash mobs.

I am in bed by 10:00 almost every night. And I’m not going to feel bad about that anymore. I’m not going say dumb things like, “Oh, I have to go to bed early because I’m old.”

I don’t go to bed early because I’m old. I go to bed early because I wake up at exactly 5:55 pretty much every day. The first sound I hear in the morning is my 10-year old son, Jack, slamming his drawer after he takes out his clothes. As soon as he closes his drawer, our new puppy Wolfie starts to bark from his crate. Even on the weekends this happens, because neither puppies nor autism care much about sleeping late on Saturday.

And through the course of the day, I sweat and I kiss and I laugh. I wave to people and I sing with people and I switch the laundry from the washer to the dryer. I argue with my 11-year old  Joey about why he should do his homework before he rides his scooter and I quiz my 7-year old daughter Rose on her spelling words and my 8-year old Charlie on his math facts. I try to teach 5-year old Henry how to whisper.

I go to bed early because I fully live my day, a day that begins with the closing of a drawer and a short, sweet bark.

To me, forty means no more apologies.

I am never going to have six-pack abs. Want to know why? Because I don’t care about having six-pack abs. Research shows that having a washboard stomach has little to do with whether you do Crossfit or Bikram, and everything to do with how many cupcakes you eat on your birthday. (Two, in case you were wondering.)

I choose the cupcake over the abs. I choose this.

Besides, me and my no-pack abs made people. Almost forty-five pounds of people – actually, forty-four point three five pounds, if you want to be exact about it.

I made a boy who has the same long, skinny feet as me. And he runs like the wind.

I made four brothers and one sister. I made a group of children who are fresh and naughty and funny and alive. And whenever I feel restless or nervous or overtired, I remind myself that I am the mommy.

This statement is so simple, and yet such a profound example of my truth. I am the mommy.

I am the only person who can do this job; who can teach them what it means to be a family and show them how to fold a fitted sheet and feel their warm foreheads in the dark of the night. I am the only one who can tell him your autism makes me smile.

(Okay, okay, the truth is at forty, I still do not know how to fold a fitted sheet. But I don’t care anymore.)

I made a girl who loves peas.

I’ve lived with autism for ten years now. This is a quarter of my life. Twenty-five percent. One fourth. Three thousand, seven hundred and sixty-three days, if you want to get all spectrum-y precise about it.

And you know what?  It hasn’t killed me. In fact, in some ways it has brought me to life. It has awakened every instinct I didn’t know I had. Because of autism, I listen when there’s silence and look harder in the darkness. I hold my breath for each new word, new phrase, new expression. Mom. Wolfie is for me good.

I made a boy who thinks in color. I made Jack.

Lately it seems like I can’t watch ten minutes of television without Oil of Olay coming on to remind me I have crows feet and wrinkles and laugh lines.

And every time I see the commercial I think to myself, laugh lines? I’m going to worry about those? They are from laughing. I smiled and laughed and giggled and for each and every line. For a few of them, I laughed until tears rolled down my face.

Besides, both my parents were heavy smokers. I’m lucky my face doesn’t resemble a beanbag chair, considering all the hours I spent in the back of our orange station wagon while they puffed away on their Marlboro Lights and Now Ultras.

I’ll take the laugh lines.

Right about now I think I’m supposed to say something about how I married my best friend. But to be honest, Joe and I aren’t really friends. We weren’t friends when we met and we weren’t friends when we got married and we especially weren’t friends when he ate all those Oreos.

I’ve been married to this man for sixteen years and I’ve known him for twenty. I don’t want to go showing off with my math skills, but this is half my life.

I married him because he was tender and kind and strong and very, very handsome.

I married him because my stomach did a little flip whenever he walked in the door.

Twenty years later he is still all of those things, and my stomach still flips whenever he walks in the door.

And with a lot of laundry and Bisquick and patience and no patience, we propel this little family forward every single day. We do it together even when we don’t feel like doing it together. We argue about it and we compromise over it and we laugh until our sides hurt.

You know what? Maybe we are friends after all. At forty, I’m still figuring it out.

I wonder what happened with the couple on Dr. Phil. I wonder if they ever wound up getting married or having kids. I wonder if she feels pretty. I hope so. I hope she came to terms with the idea of aging.

To me, reaching forty means going to sleep early so I can watch Jack mix the batter for his beloved waffles in the early hours of dawn, with a round soft puppy on my lap. It is rolling the long, smooth sheet into a ball and stuffing into the closet, because life is too short to spend folding. It is forgiveness and peace, friendship and marriage.

It is knowing my truth and choosing the cupcake. Or two, if I feel like it.

I love this picture of us for some reason.

I love this picture of us for some reason.

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.