Autism – My Messy, Beautiful

Dear Jack,

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

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

Because you see, Jack, my son has autism.

My son has autism.

My son has autism.

You have autism.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

An upset frog

An upset frog.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I make mistakes. Every day I make mistakes.

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

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

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

My son is in the school play.

My son is in the school play.

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

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

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

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

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

Jack and a fellow frog.

Jack and a fellow frog.

This essay and I are part of the Messy, Beautiful Warrior Project — To learn more and join us, CLICK HERE! And to learn about the New York Times Bestselling Memoir Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life, just released in paperback, CLICK HERE!

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Kindergarten

“Kindergarten for this little guy next year, right?”

“That’s right!” I said cheerily, ruffling my fingers through Henry’s soft brown crew cut. “And K-plus afterwards!”

For those of you who are unfamiliar with New Hampshire, our state boasts magnificently tall mountains and sparkling sea coasts. It has granite galore. It has access to Boston for shopping and Vermont for maple syrup and some of the cutest New England towns you’ll ever see.

What it does not have is full-day kindergarten. Apparently, it didn’t even have kindergarten until about six years ago. Every now and again a mom will say to me “Oh, you’re so lucky! We didn’t even have kindergarten when my kids were little.” Didn’t have kindergarten? How do you invest in the youth of America with no kindergarten?

A mother’s only hope is the new program, K-plus. In K-plus, the kids have regular kindergarten in the morning, followed by an afternoon of more learning, crafts, singing, and play. It’s awesome. It’s the best thing New Hampshire has done since they introduced, well, kindergarten itself.

“Oh, didn’t you hear? You didn’t hear. Uh, well, K-plus is full. They don’t have any more spaces,” she said carefully, the way one would speak to someone who is about to receive very bad news.

The world stood still for a moment.

“Hey! You hurtin’ me! YOU SQUEEZIN’ MY BRAINS!” Henry boomed. I looked down and noticed my fingers clenching the top of his head.

In an effort to save face and not appear as desperate as I felt, I chirped out, “Full, huh! Wow! Popular! Well, you know, we’ll figure something out!”

Fast forward six minutes and twenty-nine seconds later, after I ushered Henry into his room and assured him he did not have a headache and jumped back in my car and speed-dialed my husband Joe.

“HE DIDN’T GET IN!” I shrieked.

“What? Who? Didn’t get in where?”

“Henry. He didn’t get into K-plus.”

“They tested him?” he asked, probably considering all of the things Henry is good at that would not help him earn a spot in an educational program, like leaving the house without any underwear or wearing my black high heel boots and belting out the theme song to Frozen. Swearing.

“It’s full and they had some sort of lottery. He didn’t get a spot! And he’s in the afternoon!”

Afternoon kindergarten is the worst. It doesn’t start until 11:30, so you wind up feeding your kid lunch at 10:45 after you tried to keep them busy all morning. Charlie had afternoon kindergarten, and let’s just say there was some television involved.

Our first year in New Hampshire, Jack went to an integrated preschool geared towards special needs kids with autism. He took a bus. The following year Joey went to the same preschool as a “typical” kid, only he couldn’t ride the bus because he didn’t have a diagnosis. The same bus that went to the same school with his same brother on it.

Now, gentle reader, of course I did not tell Joey to flap his hands a little, that maybe he’d land a spot on the school’s yellow transportation. I never coached him to look blankly over the teacher’s shoulder when she spoke to him, or clap my hands and say, “Yes, yes! Just like that! Now act like you didn’t even hear what I said. Perfect!” That would be weird and unsavory.

It didn’t work anyway.

Unable to secure a fake diagnosis for my typical son, I drove them both that year. Except they were on exactly opposite schedules so the day looked a little something like this:

8:20       Drop Jack off

10:40     Pick Jack up

11:30     Drop Joey off

2:10        Pick Joey up

This year, my schedule looks like this:

7:09        Jack, Charlie, Rose on the bus

8:03        Joey on the bus

11:30     Drop Henry to preschool

2:10        Pick Henry up from preschool

2:40        Jack, Charlie, Rose off the bus

3:40        Joey off the bus

Fun, huh?

Next year, my schedule was supposed to look like this:

7:09        Charlie, Rose, Henry on the bus

8:03        Joey and Jack on the bus

2:40        Charlie, Rose, Henry off the bus

3:40        Joey and Jack off the bus

Do you see the difference? Do you see how that whole middle of the day nonsense just disappears? I would have had from 8:03 until 2:40—an entire six hours and thirty-seven minutes—for whatever shenanigans I could conjure up on my own.

Now, of course I’m sad that my last was headed to school all day. I’m not that cold. I was planning on having the good long cry when Henry boarded the bus in the fall – maybe even the ugly cry. And after that I was going to pick myself up and go to the mall.

Sentimentality wears thin by child number five. And despite Henry’s best efforts to remain cute and entertaining—why, just the other night at dinner he shoved a pea up his nose and then shot it across the table like a mini cannonball—it is time for him to attend school all day.

There are other options, of course. I could bring him to another school in our district where the K-plus program still has spots available. I could enroll him in private kindergarten. I could do a combination of both. I pored over this matrix the way some people contemplate their tax returns.

But here’s the kicker. The proverbial fly in the ointment, if you will. Henry has his heart set on riding the bus. It’s all he’s talked about for two years. This past January, on his fifth birthday, he opened his eyes and shouted, “I five now! Today I ride the BUS!”

Private kindergarten has no bus. K-plus in another school has no bus. The only way Henry is going to be sitting on a bus without underwear come fall is if I drive him at 11:30 and he takes the bus home.

(Insert tearing of own hair out and primal screaming here.)

“I’m going to be forty this year!” I wailed to Joe in bed that night. “I’ve been working around everyone else’s schedules for eleven years. When is it my turn?”

“Maybe we could hire a car service to bring him to kindergarten,” he suggested helpfully.

And although the he thought of Henry pulling up to the carpool line in a stretch limo every day did make me giggle, I was still very frustrated. I rolled over in a huff and flipped open my Nook.

Pretending to read, I thought about the past eleven years of my life. Between nursing hungry newborns and taking them to preschool and driving to doctor appointments and evaluations and speech therapy and birthday parties and baseball practice, my days have been carved into three-hour blocks for over a decade.

And now, half-day kindergarten.

I thought back to when I had a houseful of  toddlers and newborns, how long the days could seem, how frustrated I was a lot of the time. I cringe to remember how I swatted away small hands when they reached for my bagel and said stop knocking over those blocks you are making a big mess. I said no to more Goldfish crackers and insisted on a rigid bedtime routine.

But what I would give to turn the clock back and have one more day with those little hands and feet and faces. One hour, even. I would read another book even if the clock said 8:01 and help tip over towers of brightly colored blocks. I would share my bagel.

For me, motherhood is the tender balance of pushing them to grow and trying to keep them small; it is trying to get out of diapers and be done with car seats and teach Jack to say more and show Charlie how to ride a bike and Joey how to make his own sandwich, all the while missing the fresh smell of baby wipes and soothing tender scraped knees and longing to spread the peanut butter just one more time.

It is the ebb and flow of regret and shame.

As I drifted off to sleep I decided to enroll Henry in half-day afternoon kindergarten, to drive my youngest child back and forth for another year. I decided kindergarten is not only an investment in our youth’s future, but my own as well.

Because, God willing, one day I’m going to be an old lady. The house will be quiet; the board books donated and the bright blocks packed away. And in my old age, I may still yearn to turn back to clock, but it won’t be because I want to fix my mistakes or to make right where I went wrong.

It will be to see, just one more time, the smile on my five-year old’s face as he climbs off the bus after his first day of kindergarten.

"Whaddya mean I not goin' on the BUS?" (First day of school, 2013)

“Whaddya mean I not goin’ on the BUS?”
(First day of school, 2013)

 

 

Sometimes, I Am a Fake Wife

When I was twenty-three I wasn’t sure I wanted to get married.

I know, a lot of young women say they don’t want to get married; they don’t want to be tied down or put their careers on the back burner or be someone’s wife. But the difference between me and all those other young women is I was already engaged.

I mean, I loved Joe. I happily accepted the ring and called all my friends and squealed I’m engaged! and started buying up magazines with pictures of beaming brides on them, but every time I thought about actually being married for the rest of my life, I got a pit in my stomach.

I was confused. I was nervous. I was twenty-three. And from the vantage point of my two decades plus three years, till death do you part seemed excruciatingly long and far away.

I remember sitting on the bed in our first apartment one Saturday afternoon while Joe made tacos in the kitchen, trying to decide if this was cold feet or I was making a mistake. I thought if I could arrive at some sort answer in that moment, I would get up, walk into the kitchen and tell him I couldn’t do this, that I wasn’t ready, that marriage for the rest of our lives was too scary. I couldn’t really figure out the difference, so instead I got up, walked into the kitchen, and ate a taco with extra sour cream.

The whole thing was already set in motion, so I just went head and faked it. I went to David’s Bridal and picked out a dress for $250 and chose pale peach napkins for the reception and green gowns for the bridesmaids.

Because maybe I wasn’t sure I wanted to get married, but I was sure I wanted a wedding.

The first two years of our marriage were anything but fake. I faked nothing, from the loud screaming matches to the quiet standoffs that followed. It seemed like we fought over everything: how to budget our money and who should cook dinner and whether towels should be hung on a hook or folded over a bar. We fought about where to go for Christmas and what color to paint the bedroom and who took longer to get ready for work.We especially fought over who ate the last cookie.

But then I learned how to fake stuff. And things got better.

I’m not talking about, you know, faking it. Because although Joe is very generous and lets me share just about anything I want on this blog, he has drawn the line at sex. Sex is off-limits. It is a line in the sand, if you will. And because I respect boundaries, I will not discuss it. Besides, I have to leave something to write about in my next book.

But I will say this: I think faking it can be a bad idea.

But there are all sorts of things I do fake. Take Joe’s RV idea, for example. Every once in a while he’ll start raving about how our family should rent an RV and travel across the country, going on and on until his dialogue starts to resemble Charlie’s dream sequence; “And we could see the sun set over the Grand Canyon and there will be a flying dragon and purple cherries and…. uh…let’s see…Grand Canyon! And we’ll drive!”

Fake Wife nods her head in agreement, “Yes! Canyons! Sunsets and shiny silver vests!” And then she suggests, “Why don’t you go check the mail? I hear Sofia Vergara is on the cover of this month’s Sports Illustrated and it’s probably here by now.”

And off he goes, running down the driveway as fast as his poor frayed sciatic nerve will allow.

(No, we do not have a subscription to Sports Illustrated. But the man spent a good ten minutes rifling through my Athleta catalogue trying to find his favorite Modern Family star. I know, Fake Wife is shameless.)

I fake-recycle.

I faked wanting to move to New Hampshire. We were visiting Joe’s brother for Thanksgiving one year, and after an afternoon of feasting Joe suggested we take a ride and “See some of the cute towns in the area!” I agreed, mostly because I was tired of chasing three-year old Joey and two-year old Jack and one-year old Charlie away from the shrimp cocktail. Plus I was pregnant and figured I’d nap in the car.

We drove through one small town after another, past one horse farm after another. Joe ooohed and aaahed at the adorableness of it all, saying things like we could really build a life here and there’s a great dental practice I want to buy.

I wanted to tell him there was no way I was moving, that I loved Buffalo and the idea of both of us quitting our jobs and selling our house and buying another house and packing up all the little Thomas the Tank engines and snowsuits  and cribs was more than mildly absurd, but Fake Wife stepped in and added her two cents, “Wow! Look at all those pretty farms! I could definitely picture us living here!”

Guess where I live now? In New Hampshire. Across from a horse farm. (This is a strong argument for why faking can be a bad idea.)

I fake not getting mad when Joe uses my expensive shampoo on his curly dark Pantene-would-work-just-fine hair.

I fake interest in bulk-food stores. What is it with men and the bulk food? And the bulk hair gel? And bulk diapers and CD’s and everything else under the sun? Personally, I don’t think things are meant to come in such quantities. Giant tubs of yellow Goldfish crackers gross me out, and I’d rather make a dozen trips a year to Walgreens for a new box of Tampons than look at a crate of them that can barely fit in my attic. It’s creepy. I could hit menopause before I use them all and that’s just beyond depressing.

But whenever Joe starts talking about joining BJ’s or Sam’s Club, Fake Wife wholeheartedly agrees. The savings! The convenience! When he walked in the door last summer and proudly plunked down a huge barrel of pickles, she smiled serenely and said, “Let’s plan some barbecues!”

But the pickles soured before we could eat them all, and after six pairs of hands fished around in the barrel, the juice was all cloudy so we had to throw the whole thing out. (That’s right. Six pairs of hands. You didn’t think I was touching those pickles, did you?)

I remember giggling to myself as I dumped out the pickles and rinsed the container in the sink, thinking how over the course of sixteen years, I’ve finally started to learn how to let some things go, how to fake it.

Maybe it’s not being fake exactly, but keeping every disagreement from turning into a war, even if towels really do look cuter hanging on a hook than taking up half the wall folded over a rod. It’s the give and take that we desperately needed as bickering newlyweds.

Because the wedding is a hazy memory; the dress from David’s Bridal packed and yellowing on a shelf in our basement and the pale peach napkins long forgotten, but this marriage is very real. It is full of surprise and disappointment and confusion and joy. And if my twenty-three year old self was right about anything, I was right about how long marriage is. I just didn’t realize that longevity was an advantage; that year by year Joe and I would understand each other more and more.

So I guess faking things isn’t always such a bad idea–in fact, it’s part of building a life together. Who knows, maybe someday I’ll actually fake myself all the way to a shiny sunset over the Grand Canyon.

But no way am I going in some RV. I’ll fly.

 

Don't we both look so happy here?

Don’t we both look so happy here?  Why so serious, Joe?

 

A little better.

A little better.

I specifically said NO CONGA LINES during the reception.

I specifically said NO CONGA LINES during the reception.

Sometimes, I Am a Fake Mom

On Saturday morning, just as I was placing a K-Cup into the Keurig for my first cup of coffee, eight-year old Charlie started to tell me about a dream he’d had the night before.

“And then the dragon ate a purple cherry and he started to run so fast. He was running and uh, he was wearing a…what do you call that thing again? Where it has no sleeves on your arms? A vest? Yes, a vest! He was wearing a silver shiny vest. Like, shiny! And then….uh…then…let’s see….”

I know, precious, right? For the first two minutes. After that I felt like I was slowly pulling brightly colored scarves out of a clown’s mouth, one silky strand at a time. I began supplying words to speed up the process—“Vest! It’s called a vest!”—and tried not to yawn.

I mean, imagine if you were in meeting at the office, and your co-worker started nattering on and on about his dreams. “And then I dreamed I was riding a horse through the woods, and ….” Eventually you would say, “Listen, Doug, that’s all good and the horse sounds really fun, but we have to get moving with this meeting, so you need to wrap it up.”

But you can’t do that with kids. They don’t get it. They do not possess the skills to wrap it up. They are oblivious to the eye roll, the subtle sigh. That’s where Fake Mom comes in!

“And then! Then the dragon grew wings. Yellow wings with blue stripes! Well, they were more like zig-zags. Or maybe dots? I can’t remember…but he was…well, he flew in the air so fast….”

Just before I reached for some matches and lit my own eyelashes on fire, Fake Mom stepped up and took the reins of the runaway dragon.

“Charlie! What a creative dream! Show me how fast he flew! Can you fly up the stairs and look for a silver vest in the costume box so you can look just like the dragon? Awesome!”

And away the child galloped, flapping his arms and pretending to fly, all the way to the playroom to look for the silver vest. I let out a big sigh, poured half a bottle of vanilla creamer into my coffee, and took a long sip.

(No, we do not own a silver vest. But it kept the young lad busy for almost an hour trying to find it. I know, Fake Mom is shameless.)

With five kids, Fake Mom is essential. She comes in very handy in the grocery store, at the library, negotiating the radio station in the car.

(Note, do yourself a favor and learn from my mistakes. Do not announce something like, “Shhh. Mommy loves this song!” when you’re all in the car. Because while you’re excited to zone out for a little while and listen to your friend’s wedding song from 1998 and dream about how cute you looked fresh off your own honeymoon in your black cocktail dress, this will happen:

Me:                     “Ssshhh….let’s be quiet! I love this song!”

Ten-year old:     “This song? This is terrible!”

Eight-year old:   “I like Justin Bieber better. Can you find one with Justin Bieber?”

Five-year old:    “Justin BEAVER?”

Nine-year old:   “Justin BIEBER. He went to jail.”

Six-year old:       “No he didn’t! He went to the moon!”

Five-year old:    “The MOON? Justin Beaver go to da MOON? There no wood to chew on DA MOON!”

And just like that, your song is over.

This is an excerpt from an actual conversation that took place in the Red Hot Chili Pepper. The song was My Valentine by Martina McBride, in case you were wondering.)

Fake Mom helps me let go of those ridiculous arguments kids love to engage in, like the time Charlie tried to convince me he could walk upside down. “On the ceiling, Mom! Or even in the sky! My legs would do it, I know they would.”

My first instinct was to roll my eyes and say something snarky like, “Okay, smartie, why don’t you try it while I stand here and watch. And spoiler alert! We are NOT going to the hospital when you fall and crack your head open.”

Fake Mom does not believe in snark. She is snark-less. Instead, she smiled brightly and told Charlie that maybe he can walk upside down. After all, anything is possible! Probably better to wait until he’s a little taller to try it, though.

Fake Mom does not fall to the floor in a fit of giggles when Henry shouts, “These goddamn carrots are crunchy!” at the dinner table. Instead, she rearranges her features so they read polite, yet stern. Unaffected. She seizes the teaching moment with a firm, “That is not a nice word. And carrots are crunchy, aren’t they? Yum!”

Many of you who know me understand that Rose is probably my favorite child. It’s not because she’s my only girl or anything like that. It’s because—at six years old—she is the most pleasant person I know. Easy breezy. Sweet and kind and generous and helpful and good.

But she lost some serious points last week when she cornered me to help her pick out an outfit for her upcoming date with her Daddy. Joe had missed this year’s annual father-daughter dance because we were in Jamaica, so he promised her he’d take her to dinner to make up for it.

Two days before said date, my pink daughter called me into her room under the pretense of helping her find a library book. Then she trapped me. She all but kicked the door closed, spun around on one foot, and began a verbal assault that went something like this:

“Which dress do you think Daddy will like better, the red or pink? The pink one twirls more but the red one has more flowers. Or maybe the blue dress with a red coat? What’s his favorite color? Just look at these silver tights I found! Oh where did I put that lip gloss? I can’t even wait to have dinner with Daddy!”

I gaped back at her and slowly lowered myself down on the bed. Daddy’s favorite color? I felt like saying. The guy who kept me up all night snoring and dared question the Macy’s charge on this month’s credit card bill after he went to Vegas? Who cares what his favorite color is?

At the rate things were unfolding—literally, dresses, tights, and cardigans were unfolding everywhere—Henry was going to get bumped up to favorite child. And that kid is crazy.

Cue Fake Mom!

“Rose, I think he would love the blue one. He loves blue! It matches your pretty eyes. Now, stop unfolding all of those tights.”

I know you’re all waiting for it. You’re waiting for me to gloss this over and say something like, “I’m never ever never a fake mom with my amazing son who has autism!”

But it’s not going to happen. I’m not going to say anything like that. In fact, I probably use Fake Mom the most with Jack.

Take the other morning, for example. The elementary school bus comes at 7:09 in the morning, and we have three kids who need to wake up, get dressed, pretend to run a toothbrush around their mouth and fingers through their hair, eat breakfast, find the left boot, find the yellow mitten, run down the driveway, and get on it.

About 92% of the time, this goes very smoothly. But the other 8%?  Disaster.

On this particular morning, Jack–normally the most organized–was moving very slowly. “Jack!” I said sharply. “Put your boots on! Where is your backpack?  Did you even pack your snack like I asked you? What is taking you so long! Hurry up!”

He covered his ears and shouted, “Shut UP! Stop talking so much!” right back at me. I felt a bubble of anger rise up in my throat.

Fake Mom rescued me. She rescued us. Instead of taking a deep breath and screeching how dare you talk to me like that you have no respect if I ever talked to my mother that way I’d be dead you are ruining my morning, I sat down on the bench and took his warm hands in my own.

Fake Mom whispered really quietly in my ear; take a second, you can miss the bus for once, look at his face, hear his words, stop talking at him.

“Jack. What do you need?”

“My boot. Is wet. It’s wet. Too wet.”

And it was wet–soaked, in fact, from sledding the day before. So we settled on sneakers and agreed he’d stay off the icy snow banks for the day. We also agreed that shut up is ugly and mean. And after all that, we still made the bus on time.

Sometimes, Fake Mom is the best I can do.

See, Fake Mom reminds me that although I can buy a song by Martina McBride on ITunes any time, I only have so many years left to hear five-year old Henry lisp the words to Justin Beaver.

Because of Fake Mom, I take a moment to notice the quiet delight in a little girl’s eyes when she finally settles on the navy blue dress and glittery silver tights. I see that the boot is too wet, and I can appreciate that every now and again, it’s important for a dark-haired boy to believe he can walk across the sky without falling.

(But trust me, once everyone has turned their attention back to the goddamn crunchy carrots at dinner, even Fake Mom looks away and snorts into her hand until tears run down her face.)

Maybe I should write a post about how to be a Fake Wife. I’m really good at that too.

A date with Daddy

A date with Daddy

The Boxer

“I don’t think you should read the new Sue Monk Kidd book,” my friend Melissa e-mailed me. “It’s too violent for you.”

For years—decades—Melissa has previewed shows and movies and books like Six Feet Under and The Kite Runner and Twelve Years a Slave, letting me know if there’s children being abused or women enduring rape or slaves getting beaten, because she knows I can’t read or watch anything violent.

I have a nearly irrational phobia of people being whipped. I had to leave class when my 8th-grade history teacher, Mr. Broggy, showed Glory; a movie about the Civil War where Denzel Washington is beaten for stealing shoes. Even Fifty Shades of Grey was too graphic, too aggressive, for me to finish.

I know exactly when and where this all started. I was six years old, and my younger sister, Sarah, had croup.

My father had left a few months earlier, returning to pack his things with such a vengeance that three-year old Sarah went upstairs to her dresser and brought down the pink sweater she’d gotten for Christmas, thinking he meant to take the gifts, too.

My mother was frantic, panicked as her youngest child wheezed and barked.  From where I was sitting on our brown couch, I watched her open the front door and usher in the neighbor—a last-minute babysitter for me and my older brother.

Things seemed like they were moving so fast and my mother was barely more than a blur—a streak of curly hair and a blue sweater. It was as if I could feel her distress more than I could see her expression.

Someone had left the TV on. It was a movie about a ship, and the captain was tying a man up. The man was shirtless, and slowly, methodically, the captain began to count out the lashes while the man thrashed in pain, eventually sagging towards the deck.  And throughout it all; my sister’s harsh cough, her gasp for air, her soft cries.

I thought she was going to die.

If my six-year old self possessed the language to describe this moment, I would have used words like vulnerable, afraid, confused. My insides felt like a whirly-twirly snowstorm; the icy cold flakes falling so fast I could barely catch my breath.

And now, whenever I see or read or hear someone being beaten, flogged, whipped, I physically recoil. I get nervous and my stomach clenches. I get very anxious if I see previews for a movie about a ship or a captain–I didn’t even want to watch Pirates of the Carribean.

And yet—strangely—I absolutely love the Rocky movies. When we first married and had no kids and were so busy we didn’t know what to do, Joe and I would get up around 10:00 on a Saturday, eat breakfast, shower, and flop back on the couch just in time for a Rocky marathon.

I was about nine when I first started watching them, and by now I can recite nearly every single line to Rocky III, the one where Apollo coaches Rocky to defeat Clubber Lang.

Right now, my nine-year old son, Jack, loves the movie Annie. He talks about it all the time and watches it as much as we allow—usually about once a week.

Because of autism’s hold on his expressive language, Jack can’t really tell me why he’s so fascinated with this particular movie. When we ask him why he wants to watch it again, if it scares him, his answers are usually disconnected and unrelated: “She wears a red dress.” or “Carol Burnett plays Miss Hannigan. She was born on April 26, 1933.”

But I recognize the way his mind is working, the way he’s is anxiously considering the idea of living without his family as an orphan. Sometimes when we’re driving to the grocery store or I’m helping him brush his teeth, he’ll blurt out a question. “How do you be an orphan?” or, “When you are an orphan. Do you have a last name?”

He is caught in the middle of his own snowstorm, only instead of a shirtless man tied up on a ship and a sister with a deep cough, the twirling white flakes resemble girls with no mothers and long rows of iron beds in a single room.

Two weeks ago, Joe and I saw Sting and Paul Simon in concert. The two dynamic performers opened the show together, and then they spent the next couple of hours changing places onstage, singing their own songs with their own bands. Towards the end of the night the stage darkened, and when the lights came back on they stood together, nearly motionless at the microphones, and began to play my very favorite from Paul Simon: The Boxer.

It was magical, and in an arena in Boston I was overcome with the harmony of their voices. Listening to the final verse of the song, my mind wandered back to that afternoon, when Jack had yet again slipped the Annie DVD back into the player.

I’d heard Mrs. Hannigan’s voice screeching from the family room, and I walked in to tell him to turn the DVD off, that he’d already seen the movie that week. But as I came into the room, I was drawn into the familiar tunes and the promise of tomorrow, and I sat on the edge of the couch and rubbed his foot. Eventually I scooted up next to him, and in an uncharacteristic gesture, he rested his head on my shoulder for a moment.

Maybe what Jack and I both like is the happy ending. Maybe we’re drawn to stories where the underdog triumphs; a little girl in a red dress is adopted by a millionaire and an untrained fighter from Philly defeats the seemingly undefeatable.

I can’t say I’ll read Sue Monk Kidd’s new book, or any book about slavery or ships or floggings, for that matter. Thirty two years later, the memory is still too raw, too tender. When I remember that early spring evening in my childhood home, I feel like I’m six again, like my father just left and our family is slowly eroding –first from divorce and then from croup’s seal-like bark.

But we didn’t erode. Sarah did not die of croup, and through the years we huddled on that same brown couch and read books and laughed and poked each other. Together we watched Rocky movies. The family that once was five became four, and the snowstorm quieted, even if the cold flakes didn’t fully melt.

I think maybe on that stressful evening three decades ago, a tiny seed clung to the frozen ground in the midst of the twirling snow. Over time the seed sprouted and blossomed, and on the really hard days, it gives me strength to fight, for my marriage even though my parents couldn’t fight for theirs, for the things that are rightfully mine, for my nine-year old underdog with autism.

Because, as Paul Simon sings, we are all fighters by trade; not just boxers, but slaves and orphans and young boys with autism. Mothers who stay, and a little girl with a small pink sweater in her outstretched hand.

In the clearing stands a boxer,
And a fighter by his trade
And he carries the reminders
Of ev’ry glove that laid him down
And cut him till he cried out
In his anger and his shame,
“I am leaving, I am leaving.”
But the fighter still remains.

Me and my sister, Sarah

Me and my sister, Sarah

Men Are From Who Knows Where, Women Are From Venus

It’s no secret that men and women are different.

Author John Gray wrote an entire guide to understanding the opposite sex, called Men Are From Mars, Women Are From Venus. It was a big hit; a New York Times bestseller found on night stands everywhere.

We don’t think the same, feel the same, eat the same. We don’t look the same, and we certainly don’t communicate the same.

And in my house, we do not help with homework the same. In fact, nothing highlights the differences between my husband and I more than a good old math sheet or a list of spelling words.

A lot of people ask me what it’s like to do homework with five kids. And I always smile serenely and say, “Oh, you know, no big deal.” Because to me, it really isn’t a big deal.

This is my philosophy about homework: teachers teach the stuff in school, and homework is basically a review of that stuff. If my kids come home and open their homework folder and say they can’t do the stuff, then we put it away. I am not qualified to teach the stuff; the math is too new and the handwriting is different. I think they’ve even changed the alphabet since I was a kid.

If my kids whine and complain and ask me for help I giggle and tell them,“I’ve already DONE third grade! Now it’s your turn!”

But even though I’ve done all the grades, there are so many things I don’t know. Why, just this academic year alone, I realized I know absolutely nothing about the winter habits of the red fox or where the nucleus is in a plant cell. Or how to use a Cuisenaire rod.

To me, homework is something to get out of the way; hurry up and finish your homework.

All of our teachers do an exceptional job preparing our kids so they can come home and do their homework. But every once in a while, there is a stumbling block. They don’t remember the words or how to measure the polygon, and when this happens I chirp brightly, “No worries!  Pack it up and learn it tomorrow!”

I’m sure I am contributing to the downfall of America with my philosophy—or at the very least the downfall of our family—but so be it. I can live with that.

Joe’s philosophy, on the other hand, is different. To my dear husband, homework is actually a time to learn, to explore, to research.

If Joe doesn’t know the answer to a question during homework time, then by golly, he’s going to find out. IPads are summoned, Google is consulted. Scrap paper is used. What could be accomplished in four minutes stretches to a half hour or more.

I’ll admit it, I have hissed things like hurry up and finish your homework before your father gets home you don’t want him to help you, do you? 

I can’t lie. When we learned our second son, Jack had autism at the tender age of two, we had dreams he’d adopt some of Rainman’s more savory qualities. We fantasized about match sticks on the floor and counting cards in Vegas. At the very least we thought he’d be a math whiz.

Now Jack is nine, and sometimes people ask me if he’s good at math. The answer is no. Unequivocally, without qualification: no. A black and white no. Literally, no. He is not good at math.

I cannot understand it. How can a boy remember that the last time he had scrambled eggs with bacon was on August 24th, 2009 at an IHOP in Connecticut, but he can’t remember the answer to six times eight?

And Jack hates homework. We have had enormous tantrums, complete meltdowns, and ballistic fits over things as simple as flashcards.  He digs his pencil into the paper with enough force to rip it, or, even worse, he stares blankly down at his hands with a vacant look in his eyes. He kicks the chairs, and inexplicably, tries to bite the walls.

There was one trying evening in particular when Joe was helping Jack with a math sheet. I had been struggling off and on all afternoon to get him to finish it, and after dinner the white paper sat on the kitchen counter, mocking us. Most of the answers were blank and some had a few scribbles next to them.

I don’t know what this kind of math is called, but it required the homework-doer to compute two numbers inside of the parenthesis, and then do another calculation after that. The nightmare looked something like this:

2 * (4 + 6) = ______

oh my word please just add the four and the six before I go crazy and then multiply it by two this really isn’t so hard stop staring at the counter you are never going to finish high school or move out of this house

(I thought it might be good to include the things that were running through my head. You know, so you get the full picture.)

Is this advanced algebra? Or maybe calculus? Really, I don’t know. But to Jack it might as well have been ancient hieroglyphics or instructions about how to build a pyramid.

Joe wasn’t having much luck either.He used a big thick marker to emphasize the parenthesis; he took him through the problems again and again while I hovered nearby, ready to declare game-over.

And all at once, Joe’s face lit up.

“Jack, buddy. Think of it as getting dressed. You have to put your underwear on first, right? The underwear is like the parenthesis. You have to do it first!”

(Insert blank stare here.)

Desperate to reach Jack before he slipped away for good, Joe got up from the counter and started dancing around. “Jack, JACK!  What do we put on first, underwear or pants?”

“Uh. Underwear,” Jack answered uncertainly.

“That’s RIGHT!  Your underwear!  See!  See how I put my underwear on BEFORE my pants, just like you have to finish what’s IN the parenthesis first!”

And as six pairs of eyes watched incredulously, Joe unbuckled his jeans and let them drop to the floor. There he stood, in the middle of the kitchen, with his boxer shorts on. (Royal blue with bright red hearts, in case you were wondering.)

Jack’s eyes widened. He covered his mouth and giggled,“Put your PANTS ON!”

Suddenly, the mood was lifted. Jack broke free of autism’s tricky hold for a few minutes, bent over the paper, and finished his homework. And every time he had to add what was in the parenthesis, he smiled a small smile. Once I heard him whisper, “Underwear.”

When the worksheet was packed away and the pants put back on, Joe took all five kids upstairs for baths and showers. I bent over to retrieve a pencil that had rolled under the stool, thinking of a game Joe used to play when Jack was a little over a year old, when he didn’t talk or point or coo or laugh.

When he didn’t recognize us.

We’d sit at dinner and Joe would tap his own head. “Jack!  Daddy. I am Daddy. Look at Daddy.” And then he’d go around the table, tapping first Joey’s head, “Look at Joey. Brother Joey,” before my turn.

“Mommy.Jack, this is Mommy. She’s your Mommy! Look at Mommy.”

I hated this game. I hated feeling Joe’s finger tap my head and I hated the way Jack would not so much as look up from his macaroni and I hated how it reminded me that  something was wrong with our son.

An occupational therapist once told me a mother’s job is to keep her children close to home—to nurture and cherish—but a father’s job is to show them the world. As she explained, a Mama bird draws her baby chicks back to the nest again and again, but the Dad gently nudges them out—showing them how to dig for worms and look for shelter. How to fly.

Maybe women really are from Venus. After all, this planet was named for the Roman Goddess of Love and Beauty. And Mars is named after the Roman God of War, which of course is exactly what homework with Joe looks like at first glance; a battle, a conflict, a struggle. But a second look is more telling.

Not war, but a father teaching from his heart.

Teaching his toddler boy how to look up from a bowl of macaroni on a clear summer evening and say mommy. And now, seven years later, a father showing his nine-year old how to measure and add and spell.

How to fly over autism’s parenthesis and touch the bright cloudless sky, if only for a moment.

Joe & Jack

Joe & Jack

Top Ten Resources for Autism

Sometimes people ask me if I have any good resources to share. And I look at them blankly and they explain helpfully, “You know, resources about autism?  Websites or books?”

So, in no particular order, the following are my top seven resources for autism.

(I know I said ten resources in the title, but I’m striving for brevity with this blog and between the Richard Sherman thing and the post about grandparents and pictures from my vacation, I’ve really been going on and on lately. So, seven it is.)

Exercise

It took me a year to figure out how to do a double-under. You know, when you jump rope and you have to make the rope pass twice under your feet in a single jump? A whole year, this took me.

Lately I’ve been getting up at 6:00 am to exercise because my Crossfit gym doesn’t understand that I also have elements of autism and am extremely rigid about my schedule, and they went and canceled the 7:00 am class I’d been taking forever.

It stinks. It really does. It stinks to get up when it’s dark and cold out and it stinks to have to go to bed early worrying about the workout the next day.

But once I’m there, I don’t have to think about anything more than a rope passing under my feet five, ten, fifteen times in a row. All I have to do is listen to the steady tick tick tick of it hitting the floor and the deep exhales of my own breath and the blood rushing in my ears.

And suddenly it doesn’t stink anymore.

A Good Babysitter

Obviously, it wasn’t easy to find the right sitter who could handle five kids at a time, one of whom stims and has a verbal tic and obsesses about the color of the water in the toilet. But now we have several, and they love him and he loves them and the kids get excited and it’s really great.

Joe and I have gone out every Saturday night since my oldest son was six months old. I can count on one hand the number of times we’ve missed our night out, and it was usually because I was in the hospital having another baby. And when we had a newborn, that little addition just came right along with us.

It’s expensive, and sometimes I don’t feel like going. There are nights when I just want to crawl into a pair of pajamas and lie on the couch with a big bowl of ice cream.

But my truth is this: there are moments I worry we will not make it. I worry that we are one huge Oreo disagreement away from it all crumbling—disintegrating like the chocolate cookie itself into a cup of cold milk.

Date night revives us. We eat and we laugh and we talk about all sorts of funny things. We talk about fear. And I look in his brown eyes and I think about how he’s just as handsome and interesting as the day I met him.

And—bonus!—he  always picks up the check.

Ghirardelli Brownies

Sometimes, I eat my feelings.

This habit started a year ago, when Jack was in third grade and homework really overwhelmed us both. Every couple of days I would bake a pan of brownies. You know, for the kids. And as the homework wars raged on throughout the course of the afternoon, I would begin picking the edges off until all that was left was a floating island of chocolate in the middle of the pan.

I figure I deserve it after all those dumb double-unders.

My Gut

Personally, I hate the word gut. It’s ugly. But mine has never steered me wrong. I started following it when Jack was about six months old, because it kept nagging at me and saying really annoying things like wow he isn’t doing things on time something is wrong.  It would not be silenced, even with aforementioned brownies.

The gut thing is two-fold. Yes, I follow my gut, but I also discovered I have guts. One of the hardest things I ever did was at the local YMCA, when Jack screamed out those boys are really, really black as two college kids walked past us. I made myself catch up to them and call them back, shakily I made introductions and explained the intention behind Jack’s seemingly cruel comment.

This might sound weird, but after that experience I knew I had the courage to raise an unusual son in a usual world. I knew I had guts.

Family Pictures

Now, I don’t mean pictures of my family hanging on the walls. I mean, who needs those?  With the invention of the IPhone and digital photography, these kids have bFamily Pictureseen taking selfies and posting them all over my screens for a year now.

No, I’m talking about a book here: Family Pictures by Sue Miller.

Right now you’re probably thinking A-ha!  A Book!  Finally, something I can sink my teeth into on this silly list of “resources”.

Except its fiction. It’s about a family with six kids, and the second son, Randall, has a severe form of autism. I first read it when I was in college and I’ve probably re-read it every year or so since.

It isn’t even so much about Randall, as much as how the entire family breaks down around him, in many ways because of him—because of the tremendous stress a kiddo with autism can place on a family. The parents disconnect. They divorce. The kids resent Randall. It’s kind of a mess and there really isn’t a happy ending.  In some ways, it is my cautionary tale.

Great book though.

Writing

I have an entire laptop and several notebooks and scraps of paper next to my bed full of crap I’ve written. Most of it is just terrible. (Yes, even worse than this post.) But I keep doing it anyway.

Some people ask me where I find the time to write. And the truth is, I don’t know. That is, I didn’t know until I read Mary Beth Danielson’s article, Seventeen Minutes of Kayaking, a few months ago.

In her essay, Danielson talks about our need to honor our inconvenient passions; to pursue what lights us up from the inside out, and to chase what is rightfully ours.

She suggests that spending a few hours writing every week actually made the rest of her life with toddlers and babies and commitments work. Reading this, it dawned on me: writing helps me somehow fit the puzzle piece of Jack and autism and my family together.

Because to write about my son, first I have to really see him. And once I really see him, I want to write about him. I want to tell you about him.

So I make the time.DSC_0343

The Other Small People Who Live With Me

Whenever I am thoroughly confused by something Jack is saying or screaming or doing, I automatically look to Joey, Charlie, Rose, or Henry to help me out.

They are savvy, let me tell you. They are like little Autism Whisperers. Over and over they draw him out and pull him close.

Like the time we were all eating steamed clams with lots of butter and I really wanted Jack to try one. After a few minutes Joey advised, “Mom, you need to let him touch one first. He has to feel it before he will eat it.”

Sure enough, once Jack cradled the clam shell in his palm and slid his finger around the edge, he popped a forkful into his mouth. “Huh. Slippery.”

(Ten-year old Joey just read that part and suggested he’s really a “medium” person.  So, The Other Small and Medium People Who Live With Me.)

This ManDSC_0201

I am totally running over on word count here so I have to keep this part short. This is all I’ll say about Joe:

Yes, some days I worry we won’t make it, we won’t last. But I know I could not breathe without him, and maybe that’s enough.

He is my other perspective, my open window when the door is closed.

But he snores.

This Boy

Before Jack, I never knew anyone who had autism.  In fact, the only exposure I’d ever had with spectrum disorder came from the movie Rainman.

But now I live with someone who has autism. And every single day I learn from him.

When he was about three, it occurred to me that instead of plopping him in front of those Baby Einstein videos so I could scour the Internet to learn more about things like joint attention and pervasive developmental disorder, I would be better off watching and listening and hearing my own son.

Because, yes, Wikipedia told me that joint attention means shared focus of two individuals on an object and is achieved when one individual alerts another to an object by means of eye-gazing, pointing or other verbal or non-verbal indications.

But all I really needed to know was that when my neighbor walked his adorable little dog, Boots, past our window, and I pointed and said look Jack there’s Boots do you see him, Jack did not turn so much as a hair on his head to see what I was trying to show him.

Wikipedia never explained the way my stomach would lurch, or the way I frantically started to point things out bird dog tree cup mama dada look Jack look look look like a crazy person.DSC_0155

Wikipedia didn’t tell me that one day, Jack would look. He would follow my pointed finger to the bright blue sky and repeat pwane sky pwane sky as a giant airplane flew over our heads. And that I would feel simply weightless with joy; like I could have floated right up to the sky myself and bounced on a fluffy white cloud.

Wikipedia doesn’t do that. Only Jack can.

I know, I know. Some list. Not even one website or support group or research article. (Give me some credit though, I did recommend a book. Plus I said seven but I actually did nine.)

But here’s the thing. If parenting and autism has taught me anything, it’s that I need to be whole so I can appreciate Jack’s wholeness—his rare smile and his quick hugs and the way he organizes the K-cups into neat rows for my morning coffee.

I need to read and write and laugh and live out loud. I need to be brave, and I need to eat the brownie if I feel like eating the brownie.

Most of all, I need to chase what is rightfully mine, and some days that’s nothing more than closing my eyes, taking a deep breath, and jumping the rope.

WCMCoverWeb

Looking for the Rainbow

Last Thursday was kind of a crummy day.

First there was Jack’s IEP meeting, where his team gets together to discuss his Individualized Education Plan. Now, I know I’m unusual because I actually love Jack’s IEP meetings. I love everyone there and we’ve all worked together for over six years, and for an hour we trade stories and laugh and have a good old time. This meeting was no different.

Except we had to talk about Jack’s transition to middle school.

Ever since his older brother, Joey, started fifth grade in September, Jack’s been closely monitoring the intricacies of middle school. “Your locker. You put your jacket in there?” he’ll ask. Or, “Who is your teacher for French. The language.”  The timing has coincided with Jack’s discovery of his own autism, his own diagnoses, his own differences.

One afternoon he and Joey were sitting at the counter, and Jack instructed me, “Call Mr. Fournier. Tell him no aide for me next year.”

Joey piped in, “Well, Jack, you might get lost. You know, switching classes and your locker and everything.”

Jack rarely makes a lot of eye contact unless we prompt him. But at the counter with Joey, he turned and leveled his gaze at his older brother, and asked evenly, “Do you get lost. When you go from Miss Opitz to Miss Hayward’s class?”

“Well, uh, no,” he answered.

“Well, Mr. Fournier doesn’t really decide that stuff,” I told him. “He’s the principal. Your team makes those decisions.”

“My TEAM? Who is. This team.”

“Yeah, mom, this one’s yours to handle,” Joey said, popping a handful of pretzels in his mouth and sliding off of his stool.

At the IEP meeting on Thursday, Jack’s team and I did just that: we handled it. We talked about Jack’s yearning to be just like everyone else; to stay in the classroom and not go to speech anymore and to be independent of a paraprofessional. Sitting next to his teacher, Mr. Hines, it occurred to me that he sees middle school as a chance to start over, to begin anew—to shed autism’s brightly colored skin and morph into the throng of students unnoticed, unseen, un-different.

But in reality, he isn’t ready. Jack will need a paraprofessional again next year. He will need speech and OT and homework modifications. He’ll go to a class called “Skills”, and learn practical things like study habits and organization skills. There won’t be French for a while, maybe ever.

I nodded my head and agreed, yes, oh, yes, this is all good stuff. And it is good stuff. But inside a small storm was breaking out inside of me. Jack was going to be devastated.

As I left the meeting I forced a smile and said, “Well, he’s very excited about his solo in the concert tonight!” Both Mr. Hines and the case manager looked at me, confused.  “Solo?” Mr. Hines repeated.

“Yes, he told us he’s singing a solo of at the cabaret tonight. Beauty and the Beast. Should be interesting!”

On the two-mile drive from the school to our house, I thought about my own fourth grade teacher, Mr. Cehanowicz. He was tall with a moustache and he wore plaid shirts. He used to tell us that problems are like a piece of paper because there are always two sides.

When I got home I had to make a phone call to the ski resort where we were taking the kids for the weekend to confirm Jack’s lessons with the adaptive program. The bubbly woman on the other end confirmed that yes, he was all set up for two days, and it would be $199 extra. Per day. “And that doesn’t include rentals!” I felt a flash of frustration when I hung up the phone.

Please understand. This is not about the money. We have the money and we will pay the money and it’s not the thing. The thing is it just stung. It felt a teensy bit like “Oh, we’re so sorry your son learns differently but it’s going to cost you. Now give us your money.”

Standing in my kitchen with my keys in my hand, something washed over me that I couldn’t name. I felt low, empty. I turned to walk out the door to pick Henry up from preschool, but the phone rang again.

It was Jack’s case manager, calling to warn me there had been a misunderstanding, and that Jack actually did not have a solo in the concert that night.

Oh, boy.

When he got home I explained to him he would only be singing with the general chorus that evening. No solo. I braced myself for impact, but he just looked at me and said slowly, “I won’t? Sing Beauty and the Beast by myself?”

“No, buddy, not this time.”

As the poem goes, autism’s storms come in many forms.  (That isn’t actually a poem. I just made it up. But it is true.) This time though, instead of the violent tornado that say, new glasses or the wrong color play dough can bring on, it was more like slow squalls gathering speed until we left for the cabaret.

“What do you MEAN I do not have a SOLO??” he shrieked on the way out the door.

One we got into the cafeteria he stalked over to where the chorus was sitting on the risers, his gray jacket balled up under one arm. I had a very bad feeling.

After the chorus finished their group song—I think it was something about Valentine’s having hearts but I couldn’t really tell because I was watching Jack so intently—students started to ascend the stage for their individual performances. After a moment he was up from the risers and perched on the stage, trying to inch his way closer to the microphone, until Joe hustled through the audience to tell him to move, to sit with the others.

I watched Jack remove his glasses and vigorously rub his teary eyes. At that moment, I wanted to take him by the hand and lead him off the risers and signal over my shoulder for the rest of our family to follow me out the door.

But I didn’t. Time and time again he hopped into the audience to find us, to complain, and we told him he needed to go back and sit with the chorus until the concert was over. He came back and sat on the edge of Joe’s leg while Rose sat on the other. She reached up and patted his cheek—a gesture he will only tolerate from her—and told him, “Go back, Jackie. I want to hear you sing.” And he did.

Once we were home I couldn’t shake the frustrated feeling that had nagged at me all day. As Joe headed out for his monthly poker game, I started to cry.

“But he doesn’t even care anymore, let it go,” Joe suggested helpfully.

This didn’t help. Because sometimes, I just want to hurt. I don’t want to blame anyone and I don’t want it fixed. Sometimes, I want to fully experience the heartbreak of elevated pricing and no solos and I do not want an aide.

I want, as Phoebe counseled, to feel the feelings instead of going straight to anger.

In the book I wrote about how I never felt grief when Jack was diagnosed, that we knew it was coming all along so I didn’t mourn it’s arrival on a crisp white form. But the truth is I grieve it a little every day.

Because if I don’t—if I do not let myself mourn the seemingly small losses—a larger tidal wave might sweep me into a sea of rage and bitterness and resentment.

Once Joe left and I ushered the kids to bed, I gave myself a few minutes to do just that. I sat on my couch in my black bathrobe and thought about the day; how to break the news to Jack that he’ll have an aide in middle school and paying more for ski lessons and the way he mouthed the words while everyone else sang their solos and duets.

Alone on my couch, I thought again about Mr. Cehanowicz and his plaid shirts. He was only partly right. Yes, there are two sides to a piece of paper, but most problems have many more. There’s your side and my side and autism’s side and the ski resort’s side. There are misunderstandings.

In fact, a problem is more like a prism with many angles of light and darkness and frustration and disappointment and love and color. They are complicated. They demand reflection. Sometimes, you have to look very hard for the rainbow.

Maybe the best skills I can teach Jack are not how to ski down the mountain or sing alone on the stage, but how to see every side of a problem; to mourn the loss of French class but celebrate a ride on the chair lift, no matter how much it costs.

To see that for every misunderstanding, there are teachers who wear glasses and karate instructors who stitch ribbons on the bottom of their uniforms.

To see that he may not always get a solo, but he’ll forever have a pink sister who loves to hear him sing.

Jack skiing

Jack skiing

 

Vacation Pictures

A guy wearing a light pink Oxford shirt with the sleeves rolled up walked over to where Joe and I were sitting at the bar, and plunked down on the stool next to me.“Hey guys!  How are you?”

That afternoon, after two planes and a layover and a harrowing bus ride that made the phrase “til death do us part” more meaningful than ever, Joe and I arrived at the heaven on earth that is Jamaica.

“Well, hello!” Joe said back. “How are you?”

We exchanged a few pleasantries—enough to realize the gin and tonic he ordered wasn’t his first of the night—and asked what brought him to Jamaica.

“My sister, she’s getting married here tomorrow. I can’t believe she’s getting married,” he said, incredulous.

“She’s eight years older than I am and she’s getting married. I mean, I could be a nephew! How crazy is that?”

“I think,” I reminded him gently, “You would be an uncle.”

“Yes! That’s right! I could be an uncle. Can you believe it? My sister is getting married tomorrow.”

The conversation ended as quickly as it started, and before we knew it he was up from the bar, clapping both Joe and I heartily on the shoulder. “I’ll see you later, okay guys?”

Maybe it was because I’d finished Anna Quindlen’s Still Life With Bread Crumbs on the plane ride—a novel about a woman photographer—but I wanted to take pictures the whole time we were on vacation. Not just of the stunning sunsets or the sparkling ocean or of Joe sipping a Red Stripe, but of the startling images of color and depth we saw everywhere: a small red boat buried halfway in the sand, a large brown dog lying in the tall grass, an emaciated man selling sundries in the street on the long ride from the airport.

On Tuesday we went down the beach to the Fireman, a man who sold fresh seafood. Everyone raved about him—you picked your own crab or lobster from the big cage he dragged out of the water, and then he grilled it right in front of you.

The Fireman

The Fireman

Joe and I walked over to the wooden porch and sat at a picnic table to wait, while the Fireman whistled and hummed and cooked. Locals drifted in and out, grabbing cold bottles of beer and trading good-natured insults with the bartender and the tourists.

After a few minutes a little girl wearing a green bathing suit toddled out of the kitchen area. At first glance I guessed she was about two, but very tiny for her age. Her mother walked behind her, waving her finger and speaking quick lively bursts of Jamaican.

I gazed back at them, watching the scene of mother chasing toddler unfold. The rest of the family appeared, followed by a trail of older kids weaving in and around the chairs and talking to each other.

I looked across the table and caught Joe’s eye, and he gave a quick nod. Yes, he saw what I saw; the little girl appeared to have Down’s Syndrome.

I felt my heart pull. What are the services like in Jamaica?  Would she get speech therapy?  OT?  Or go to an integrated preschool?  On the bus ride to the resort we passed school after school; small, squat buildings with throngs of uniformed children mingling with goats on the patchy grass.

Just then, one of the older boys—eleven or twelve—strode across the wooden floorboards, breaking me out of my reverie. In one smooth movement, he bent down and picked the little girl up.

Watching him lift her high made me want to weep.

I’d never wanted to take a picture so badly in my life. But to whip out my IPhone and pose them seemed a crude interruption to the moment at hand—even though the moment doubtlessly repeats itself over and over throughout the day.

Can you see him? Can you picture this lanky boy bending to lift this small girl? He holds her face close to his while she squirms and giggles. They are framed by the wooden pillars of the porch, and the ocean is a glimmering carpet behind them.

If you see it—if you can picture them in your mind’s eye—then I know you feel the exquisite combination of love and tenderness explode inside your heart that I did. It is almost painful.

For me, the quick swing of a brother’s long, thin arms, changed the story from class and services and who will write her IEP into a universal account of compassion and family and special and needs. It turned into a story of a brother’s love.

Watching them, it occurred to me that all this time—two years of blogging and reading and writing—I’ve been trying to do exactly this. I’ve been trying to give to you a picture of our family and our kids and autism.

But I can’t take a picture of Jack’s autism and put it in an album or post it on Facebook. Sure, I can photograph his downturned eyes and his vacant expression and even catch him stimming. But I can’t capture the social awkwardness, the obsession with the Keurig, the I don’t want this autism in me anymore.

A photo may show you how autism looks, but it won’t tell you how it feels. I can only begin to guess about that.

Two days later Joe and I were sharing a late lunch at an outdoor café on the resort. As we finished up, a couple walked over and ordered a drink. I recognized them from the destination wedding a few days before—bride and groom. We chatted about their wedding; the beautiful weather, how she’d added the belt to her dress at the last minute.

“Well,” she said, nodding in the direction of the portrait studio behind them. “Time to look at wedding pictures!”

“Oh, wait!” I put my hand on her arm as she turned away, remembering. “We met your brother!”

She turned back to me. “George? You met George? Oh boy, what did he say?” she asked warily.

“He was so happy for you,” I told her. “It was the sweetest thing—he was in awe you were getting married. He hopes he’ll be an uncle soon.”

The new bride looked up at her tall groom. Her eyes widened and her face flushed pink.

“He said all that?  I can’t believe he told you that. I have to tell my father, it will make him so happy.”

For the second time in as many days, I watched a powerful family moment of adaptation and change, shifting and movement—of brotherly love.

My fingers itched for my IPhone. I longed to take a picture and turn the small screen towards her and say, “Do you see how beautiful you are? Do you see what you look like when you realize how much your brother adores you?”

But I didn’t.

We left the next day, and on the plane ride back I scrolled through the pictures on my phone. I decided I will never become a photographer. The dog looked hot and tired. The red boat looked ordinary. (The sunset looked nice, but really, who can’t take a picture of a sunset?)

I leaned my head back and closed my eyes, and my mind wandered back to the little girl in her green bathing suit. I smiled remembering the way her diaper poked out of the bottom, how her pigtails were a little uneven. And I decided she would be just fine.  Maybe she wouldn’t get early intervention or modified homework or organized social play, but her family loves her. Sometimes that’s all you need.

Best vacation ever.

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Trip to Urgent Care

“My wrist, my wrist my wrist,” Jack whimpered, cradling his right arm. He’d just come in from sledding with Rose and Joey on the hill in front of our house, where, according to Rose, he’d flipped off the red plastic sled and rolled into the woods.

“Let me see, can you bend it this way?” I asked, moving his fingers back and forth.

“NO!” he screamed. “That hurts, that HURTS!”

“You know what buddy?  I think we need to head to urgent care and have this looked at.”

“URGENT CARE?  What is THAT?”

After a flurry of phone calls and arrangements, Joe came home early so I could run Jack into the new urgent care center downtown.

An hour later he and I sat waiting in the small exam room to see the doctor on duty. Jack took my phone out of my purse and asked, “Can I text Daddy?”

“Okay, that’s fine,” I said, reaching for the latest Woman’s World magazine and relaxing back in my chair. All at once I felt very, very tired. For a moment the room was quiet; he intent on typing and me reading about the latest in crock pot recipes.

“Ugh, Jack, I don’t like dinner from the crock pot. Do you? Do you like that chicken thing I make?”

His answer was somewhat unrelated to my question, which is not unusual. “I texted Daddy. I tolded him we should go to Shorty’s tonight. For dinner.”

“You told him, Jack. Right? ‘Tolded’ isn’t a word, you told him.”

“Yes. I tolded him.”

Before I could take my grammar lesson any further, the doctor knocked quickly and hurried in the door.

“Okay, okay now,” she said brightly, scanning the computer screen on the table. “Jack! How are you? I just have a few questions.  Let’ see….do you have any allergies?”

“No, he—” I started to answer, but he cut me off.

“YES!  I am allergic to CITRUS FRUIT.”

“What? No you aren’t! Really, he isn’t. He has no allergies.” I stared at him with my best you-better-stop-this-crap-right-now face. It didn’t work.

“Don’t listen to her,” he sneered, looking over at me as if we’d never met before—as if I did not deliver all nine pounds, three ounces of him out of my own body and nurse him for seven months and teach him how to sign mama with his chubby little fingers. “She doesn’t know what she’s TALKING about.”

“Well,” I cleared my throat and narrowed my eyes back at him. “The citrus allergy, is, um, unconfirmed at this point.”

“Ah, okay,” she said, turning to where he sat on the exam table. “Jack, where does your wrist hurt?”

“How did Jesus know he was going to DIE at the LAST SUPPER?”

The doctor looked up in surprise and shot me a quick look.

“He’s kind of been interested in that sort of thing. You know, lately.” She looked back at me blankly.

“He has A-U-T-I-S-M-F-Y-I,” I blurted out like a contestant in some bizarre spelling bee. She stared at me for a moment longer and then back at him, probably trying to figure out if we were mother-son evangelists or mass murderers.

I’m never certain exactly when or how I should assert the whole diagnosis thing. I mean, he’s nine now, and kids who are nine don’t usually ask about the Last Supper or Jesus or pretend they’re allergic to limes.

Sometimes I try to pre-empt the matter a little. Whenever I call to make an appointment for him, I explain he has autism and it may make communication a little tricky. But you can’t exactly do that with a place like urgent care.

One time I took him to a doctor and as the nurse led us back to an exam room, I noticed the word AUTISM written in large, bold letters across his chart. They must have used a black permanent Sharpie marker, the kind Jack once wrote all over ours walls with in Buffalo a week before we put the house up for sale.

If you had asked me about how I felt about seeing AUTISM written that way, I would have told you I absolutely didn’t mind. In fact, I was grateful the office thought to clue everyone in so Jack’s visit could be as successful as possible.

But it did nag at me for a while afterwards, and I couldn’t put my finger on exactly why. Was it the size of the letters? Was the staff at this particular office visually impaired? Or was it my own insecurity, my deep, unacknowledged shame about having a special-needs son?

In urgent care, the doctor finished up the exam quickly, and in between answering questions about Moses and what kind of toilet she prefers—Kohler or American Standard—determined Jack’s wrist was nothing more than a sprain. At last, to my great relief, she left the room.

“Jack!” I hissed. “What’s with the toilets! You know we said no more asking people about their toilets.”

“What,” he said smugly. “It’s good information to know.”

“And give me my phone back. What are you texting Daddy about?”

“I tolded you! I want to go to Shorty’s.”

“It’s told. You told me, Jack.”

I looked down at my phone and traced the long length of messages between father and son; Jack asking to go out for dinner, Joe telling him it was up to me.

IMG_3317

IMG_3318

I smiled to myself to see he’d used emoticons, and I was touched to notice he’d mentioned going out as a family. But what surprised me the most about his conversation with Joe was his mention of fish tacos—his warning not to tease me.

(Back story: About a year ago, I’d ordered fish tacos, and when I tasted them I’d been taken aback by how spicy they were. When the server stopped over to check on us, I’d exclaimed, “These tacos are VERY SPICY! You should really note that on the menu.” Joe has never let me live it down; almost every time we visit Shorty’s he pretends to wave over a manager, and in a voice reminiscent of an eighty-year old woman with a thousand cats at home, he whispers; “Oh, these are so spi-cy!  You should really warn people!” I know, people, I know. I married a comedian.)

As we walked out of the urgent care with a hearty good-bye and Jack’s whisper-shout, “That doctor SMELLED FUNNY!” I thought again about the word AUTISM written in black and white.

One of the first essays I ever wrote about Jack was called Paper Boy, about my intent to bring him to life beyond his paper diagnosis; adding dimension to the flatness of the clinical phrase autism spectrum disorder.

But sometimes I wonder how much of Jack’s progress depends on what I choose to see that day: it’s a good day if he wears his eye patch without a scene, bad day if he’s stimming a lot. Good if he does his homework without much drama, bad if he asks me ninety million times where I first saw the movie Annie.

Good bad good good bad good bad bad. It’s exhausting.

This is my life with Jack. It is living with the undulating rhythm of lost dreams and new hopes. It’s oh wow he doesn’t really ask about death anymore!  But now he’s obsessing about the Keurig and every time I look at the Keurig he’s standing over it and trying to take it apart and counting the K-cups and rearranging them in some mysterious order and I am going to go straight out of my mind.

Driving home in the dark, it occurred to me that I can bring him off of the paper, but I forget to add the color; the wild splashes of yellow laughter and the brilliant red tantrums and the pale pink butterfly kisses and the long silvery threads of anxiety weaving in and around his soul.

Autism is bigger than black marker on a white piece of paper; it is musings about Catholicism and plans for family dinner and sore but not fractured wrists. It’s pretending to be allergic to lemons and stimming in urgent care and a robotic voice that tolded me he wanted to go out for dinner as a family and don’t tease Mom.

And my reaction to the block letters was—like autism itself—complicated; a complex combination of sadness and gratitude and surprise and bewilderment.

Later that night we were all sat crowded in a booth at the restaurant in town, Shorty’s. I looked down the bench seat to where Jack sat, squished between five-year old Henry and ten-year old Joey. He was grabbing tortilla chips from the basket in front of him, rocking slightly and grunting to himself.

I resisted the urge to put a hand on his shoulder to try and still him, or to ask him if we should head to the lobby so he could get his zoomies out. I didn’t chide him for eating too fast. Instead, I focused on his small smile, the way he pushed his glasses up the bridge of his nose, his obvious pleasure at being together.

In the restaurant, I chose to see J-A-C-K, instead of just A-U-T-I-S-M.  I saw the rainbow of moods and emotions and potential that is my son, and for the briefest moment, I savored the wholeness of him. For the moment, it was just good.

Next time I call for an appointment, I thought to myself, I’ll tell them that yes he has autism, and yes it may make communication a little tricky. But I’ll also tell them they won’t even believe how funny he is.

I’ll add some color to autism’s black and white canvas.

Joey and Rose sledding

Joey and Rose sledding