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.

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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 Jack slamming his drawer after he takes out his clothes. As soon as he closes his drawer, 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 Joey about why he should do his homework before he rides his scooter and I quiz Rose on her spelling words and Charlie on his math facts. I try to teach 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.

 

 

 

 

A View from the Floor

Allow me to introduce myself. My name is Wolfie.

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

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

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

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

Pee on couch. Look adorable.

Poop on rug. Appear irresistible.

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

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

This is me after I peed on the ottoman.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“You are. Soft.”

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

“No para! I will not have a PARA!”

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

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

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

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

He felt less.

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

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

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

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

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

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

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

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

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

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

IMG_5325IMG_5326

 

Is Threequel a Word?

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

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

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

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

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

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

“It’s not Kanye. It is Kan-ee.”

“It is not—“

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

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

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

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

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

“Hi, hi, I’m Dr. W.”

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

[insert moment’s hesitation here.]

“I like your pants.”

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

“See, Jack, Kanye is—“

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“What. Is this.”

“A card, Jack. A card I made.”

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

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

“Nothing. I don’t know.”

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

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

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

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

I am Jack

 

 

 

A Red Leaf

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

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

Obviously, that wasn’t exactly how it happened.

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

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

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

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

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

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

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

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

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

“Joey, I need. That jacket.”

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

I want to cook eggs. Like Joey.

I want to wear Under Armour. Like Joey.

I want to take French. Like Joey.

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

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

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

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

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

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

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

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

Once a year. We go once a year.

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

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

Looking over his list, I started to sweat.

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

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

“NO! We need ONE ONLY GLUE.”

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

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

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

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

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

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

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

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

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

“Okay. I know.”

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

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

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

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

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

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

I think it all started with a single red leaf.

Jack - leaves Joey - leaves