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.

IMG_5900

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