Autism and Body Mass Index

Last week we had my 11-year old son Jack’s check-up, and my stomach sank when the doctor quietly pointed out his higher-than-average body mass index on his chart.

You wouldn’t know this to look at him; he’s pretty tall for his age with the longest, skinniest legs in the world. But he’s solid, and like many kiddos on the autism spectrum, he has low muscle tone.

“You don’t need to worry just yet,” the doctor said kindly while Jack tried to remove the stethoscope from his neck. “But you do need to be watchful.”

Watchful? Is there any single aspect of this boy of which I am not watchful?

A part of me feels like I cannot take this on; I cannot work on one more single thing with him.

(Things we are currently working on: screaming, swearing, keeping his seatbelt on in the car, screaming, saying please and thank you, using his fork at dinner, sleeping past 5:30 in the morning. Oh, and the screaming.)

But another part of me, a part that has more energy and isn’t tired of correcting him and redirecting him and shushing him and asking him to use his words, feels as though I owe it to him.

If he’s overweight, it’s my fault. I am the one who buys the food and cooks the food and sometimes, orders the sweet and sour chicken food to be delivered in a brown paper bag.

It’s my fault that I let him play on the IPad because he’s too distraught for hide-n-seek.

It’s my fault I let him have ice cream after dinner every night because his world would just fall right apart if he didn’t get his ice cream in the red bowl the minute he’s finished eating.

If one of my other four kids—and I won’t say normal or typical or whatever, I’ll just say other—started to gain weight, I would make sure they moved a little more and maybe snacked a little less. Yet, like everything in Jack’s world, autism has threaded it’s annoying wormy head into the matter and complicated it.

For the most part, it’s a pretty simple equation: burn more calories than you consume and you will lose weight. Or, burn the same as you eat and you will maintain your weight.

But for my son, the calculation is a little different. You have to factor in the way autism demands he have the same dessert every night and makes him apprehensive of organized sports’ social subtleties.

Jack loves the ritual and tradition of food; pancakes on Saturdays and waffles on Thursdays, popcorn at the movies and popsicles at the local pool. He loves to bake large, elaborate cakes for everyone’s birthday. Oh, and let us not forget his Oreo phase, when he begged to try every flavor Nabisco ever made.

He is one of the few people I have ever met who wants to eat breakfast the second he opens his eyes. More often than not, I walk downstairs first thing in the morning and find him surrounded with his bowl of cereal and milk.

“Mom. I am happy today to find. The Honey-Nut Cheerios.”

We had years where he refused anything unusual or new. As a toddler, he would only eat yogurt. Then as he got into kindergarten and elementary school, he wouldn’t touch the stuff. In fact, he wouldn’t eat anything with a wet texture, like applesauce or fruit.

Now, he is starting to try new things, like carrots dipped in ranch dressing and coconut shrimp. He is once again eating yogurt—but only Chobani vanilla-flavored from a particular grocery store on the other side of town.

(Please don’t ask me why, because I have no idea how or why the vanilla Chobani yogurt from Hannaford’s is better than the vanilla Chobani yogurt from Market Basket.)

I know we are lucky. I know many, many families struggle to get their spectrum kiddo to try a bite of anything at all. I am grateful that the dinner table is no longer autism’s battleground, but as usual there is no moderation when it comes to which way Jack’s pendulum swings.

Over time, food has become very, very important to him; planning it and shopping for it and preparing it and cooking it. His face lights up at the thought of a new recipe or a different kind of cookie.

It makes sense. Food lends order to his day: breakfast, lunch, dinner, dessert. It is concrete. It is soothing. It tastes good.

The other problem is Jack hates—and I mean hates—exercise of any kind, especially team sports.

We tried soccer. Disaster.

We attempted baseball. Nightmare.

We dipped our toes into the icy water of the swim team. Unsuccessful.

Jack and autism, by their very nature, are adverse to team sports and playing well with others and not being bossy or losing interest or staring at the ball with a blank expression as if it was an alien life form. So far, the only physical activity we’ve had luck with has been karate.

This spring he also ran track for the Special Olympics team, but he refused to do it unless his brother, Joey, did it too. Even then, it took a fair amount of arguing in the car each week before he would get on the field.

This isn’t to say he doesn’t move throughout the day. If self-stimulation, or autism’s charming side effect defined as repetitive movement, were an Olympic sport, Jack would win a gold medal because a lot of his time is spent grunting and rocking and hopping around the room.

We call it his zoomies. Apparently, zoomies do not burn off after-dinner bowls of ice cream.

And although he hated swimming on a team, whenever we go to the pool in town, he jumps off the diving board so many times it makes my head spin. High jumps, cannonballs, and straight drops into the cold water.

I suppose I could create a schedule for him—a matrix with times and meals and healthy snacks and all that. I could make a rule that he has to ride his bike up and down the driveway for at least an hour, or play tag with his brothers and sister outside.

But I spend so much of my day—my life—begging my rigid boy to flex and bend that frankly, it feels crappy to start asking him to count calories and manage a fitness routine. He is already bound by his own self-imposed rituals and rules, and I am reluctant to add any more.

Our culture is not-so-neatly intersected into two somewhat polarizing, categories; there is the love-yourself-as-you-are category, and the health-obsessed category. When it comes to Jack, I feel as though I am standing at the intersection.

See, I don’t care if Jack is overweight or pudgy or round. I don’t care about his higher-than-average body mass index or lower-than-average muscle tone.

I don’t care if he never steps foot on a soccer field or shoots a three-pointer on the basketball court the same way I don’t care if he marries a man or a woman or a purple muppet from Sesame Street.

This is what autism does for me. Having a son like Jack forces me to drag all the ugly, gross, embarrassing parts of my psyche into the light and examine them. It forces me to understand exactly where I stand at the crossroads of love and health, hope and fitness and food.

I want him to be happy. I want him to love and be loved, and I want him to have all the things he wants for himself.

I want him to enjoy the taste of cold, chocolatey ice cream on his tongue after dinner and the rush of water over his body after a jump from the diving board.

Mostly, I don’t want him to have to endure any more shame, or insecurity, or embarrassment than he already does.

“What is for me weird. They said weird for me.”

“Why am I a lonely boy.

“Mom. I do not want it. I do not want this autism in me.”

But like the spectrum itself, there is no one solution to Jack’s higher-than-average body mass index. Whether it’s swearing or screaming or seatbelts or ice cream, we can only take it a day at a time.

Today, we will remind that his body needs good food in order to be strong and healthy and fit.

Today, we will remind him that he always feels better when he rides his bike or swims in the pool or dances to the music.

Today, and every day, we will remind him he is loved.

And we will hope for the best.

Jumping into the pool.

Jumping into the pool.

#Autism

I tend to be fairly slow on the technological uptake, so it took me a while to understand what hashtags meant. At first I thought it had something to do with search engines. Then whenever I read a hashtag, I thought of hash brown, and I got hungry.

Eventually I figured out that they are the subtext of the conversation; the implied meaning or opinion.

#hashbrownsaregood

Last week, on the first day of summer vacation, our 6-year old Henry broke his leg riding his scooter down the driveway.

I’m not sure I can adequately capture the level of chaos immediately following his fall, but I will try. Let me start by saying our family is not very good in emergencies. We do not band together efficiently, or even coherently, to care for the injured party.

Instead, we shout over one another. We hold our heads in our hands and gnash our teeth. We race around like crazy people for ice and band-aids and tissues.

Generally speaking, it’s bedlam, and this time was no exception.

Let me also say that, except for my husband Joe, my son Jack is pretty much the last person I want around me in a crises. He is distracting. He is a nuisance. He is like a fly buzzing around your head while you’re trying to put out a forest fire, mostly because of his a tendency to fixate on the least useful—the least helpful—aspect of the matter at hand.

This time, it was brownies.

Henry:   [perched on the counter, clutching his leg, screaming, crying, wailing]

Joe:         Carrie, he needs to walk on it.

Jack:       We need to make brownies. You said. For brownies.

Me:         He’s screaming, he can’t walk on it. Maybe we should take him to Urgent Care.

Jack:       Brownies, brownies, brownies.

Henry:   [shrieking as if someone was amputating his leg.]

Our other three children: Is Henry dying what happened where is his sneaker are we still getting pizza Henry does it hurt why don’t you take him to the hospital he’ll probably never walk again.

Joe:         I think we should take him to the ER.

Me:         What about Urgent Care? They take X-Rays there.

Joe:         No they don’t. Stop talking about urgent care! Will you stop bringing it up? I think we should go to the ER.

Jack:       BROOOOOOWWWWWNNNNIIIIES!

In moments like this I realize how, in our house, we live autism out loud. It isn’t a secret. It isn’t a subtext, or even a hashtag.

#oursonhasautism

#hisnameisJack

#heiseleven

Jack’s three brothers and one sister all know he is diagnosed with autism, and with the exception of our oldest son Joey, our kids have lived with the spectrum disorder all their lives.

Autism is their background noise: it is the steady hum of Mozart and Alicia Keys, and most recently, the Beatles. It is the tympani of baking pans and tantrums and stimming.

I can’t say we ever really had a game plan for when or how to tell them about it. We sort of waited for them to bring it up, and then we had “The Talk.”

You know, the Your Brother Has Autism and That’s Why He Screams/Jumps/Hardly Sleeps and Can Remember that Daddy’s Birthday Fell on a Tuesday in 2004 talk.

Also known as the Your Brother Has Autism and That’s Why He Just Asked the Cashier How Many Teeth She Has talk.

Or the Your Brother Has Autism So Please Do Not Touch the Radio One More Time Because He Will Scream talk.

Although each conversation took place at a different time and place, all four of the kids asked the same questions.

Where did he get it?

Will he always have it?

Can he die from it?

Will he get married?

Can he have kids?

We answered them honestly and carefully, and gave them as much information as we ourselves have; yes, Jack will always have autism. No, he won’t die from it, and we don’t know if he’ll get married or have kids. We explained he was born with it—that an unusual twist of genetic fate brought us a baby boy who thinks in color.

If Joe was out of the room I told them that he got it from Daddy’s side of the family.

#justkidding

#noI’mnot

By living his diagnosis out loud, I guess I hoped they would learn to appreciate autism’s many sides and angles; like a brilliant diamond, their brother’s spectrum disorder has thousands of tiny facets and surfaces. Yes, it can be sharp, and acerbic, and his screams can cut glass.

But it can also be funny and colorful and interesting and bright. It can be shiny.

Practically speaking, this means we refer to it a lot, both to Jack and to the rest of our kids. We say things like, “Jack, your autism is making your brain want to listen to Yellow Submarine three-thousand four hundred and twenty times. Play a different song.”

Or, “Joey, can you grab the headphones? Jack needs them for the fireworks again this year, because his autism makes his ears so sensitive.”

#nofilter

Looking back on all of the times we’ve talked about it as a family, I realized there’s been an unspoken undercurrent after all. There has been a hashtag.

I’ve never asked them how it feels to have a brother with autism. We never asked them what they think of it, or how it feels for them, or if they’d change it.

I have no idea what it’s like to grow up alongside of Jack, what it’s like to have him scream about baking brownies when your leg is broken, or sit next to him during dinner when he rolls his piece of pizza around in his hand before he eats it.

What’s it like to have a brother who wakes you up at 5:30 on your birthday because he’s too excited to wait another minute?

How does it feel to see your older brother walk through the hallways at school accompanied by an aide, or scream during fire drills, or sit all alone on the school bus every day?

I decided to ask, and this is what they told me.

Joey, age 12:

I have mixed emotions about it. Sometimes it feels like you have different rules for him, like when you make us turn off the computer and go outside but he gets to stay inside and play his music. 

I worry about him. I think he could get married but I can’t really imagine him ever being a father. You know? It’s hard to picture him as a father.

He is so smart, and I’m proud of him. I know it isn’t always easy to be him, to have his autism.

Charlie, age 9:

Jack and I don’t really like the same things, so we don’t play together too much. He doesn’t like badminton or football, but he likes to sit next to us when we play chess. He likes his music.

It’s getting scarier when he gets upset. He’s getting louder and I’m not sure what he’s going to do next.

I think he’s the smartest one in our family, because he can remember so much.

Rose, age seven:

When I hear him jumping around downstairs in the morning, that’s how I know it’s time to get up. He’s like my alarm clock.

He gets mad sometimes. You know? Like if the radio isn’t on right or he doesn’t like a certain restaurant.

But you have to just be gentle with him. Use gentle words. In the morning when we eat breakfast together and I see he’s using his fingers for his cereal, I just put the spoon in his hand to remind him. He’s the smartest person I know, because he remembers every single thing.

Henry, age six:

Whaddya mean, how do I think about autism? Autism is my brother. It’s Jack. He’s very smart. He knows everyone’s birthdays and when gum was made.

Throughout the week, bits and pieces of my conversations with them floated in and out of my mind. I thought about how, with words and worry and broken crayons and sharpened pencils, they sketched a vivid, brilliant picture of the diamond that is their brother Jack.

Like a painting that’s been hanging on the wall forever, I thought I knew almost everything about Jack’s spectrum disorder. But I looked at the picture again with my children, and saw autism’s details through fresh, young eyes. I saw deep jewel tones and sunny pastels. I saw parallel play and regulation and behavior modification. I saw their concern, and their hope, and most of all, their admiration.

He is so smart.

He’s the smartest one in our family.

He’s the smartest person I know.

He’s very smart.

However, it was Jack himself who added the final, colorful brush stroke to his own landscape. He reminded us that even in the heart of chaos, he too has something to give.

“I wanted to make brownies. For Henry to feel more better.”

#autism

(#fortherecordtheydotakex-raysaturgentcare)

Henry, on the last day of school.

Henry, on the last day of school.

Henry, on the first day of summer.

Henry, on the first day of summer.

How Autism Affects a Family

To my middle child,

There is a lot of debate about how birth order affects your life; everything from your personality, your temperament, even what you choose to do for a living.

See, the middle child is not the oldest, and not the baby. They don’t get the freedom of the first-born, or the love and adoration of the youngest.

A lot of the books say the middle child feels left out, or isolated, or has trouble finding their niche within the family.

Others say the middle child will play peacemaker, or become a loner, or misbehave to get attention.

You, my middle son, have been especially dealt a rough hand by the deities of birth order. Smack in the middle of five kids, you are bookended by Jack—an older brother with autism on one side—and on your other side is Rose, our only girl.

Next to Rose is loud, ebullient 6-year old Henry, and flanking Jack is our eldest child, Joey.

Sometimes, understandably, I think you wonder where you fit. I think you feel lost.

We have Joey who seems to be good at everything without trying, who is affable and loving and handsome and fun. Then there is Jack, who is hope and progress, while at the same time demanding and needy. Rose, the only girl and the apple of Daddy’s eye. And Henry is the funny, sassy, naughty, round baby of the family

For a long time, I worried about you. I still worry about you. People think I mostly worry about Jack because I write about him and his autism so much, but there are times when I worry about you even more.

I worry about my middle boy, squished between autism and pink, and also competing with the first-born and the last.

You were the easiest baby. You really were. You smiled, and cooed, and slept, and ate. When I looked down at your sweet face, I thought you were born at the perfect time; you were the antidote to two hearts that autism smashed open wide; the answer to a prayer we didn’t even know we prayed. We could, once more, have a typical child.

In many ways, you were a gamble. You were our third pregnancy; the one where we closed our eyes and threw caution to the wind and took our chances to see if the wily autism gene would show it’s mysterious face once again.

You could sit in your swing for hours, content to watch the world around you, and on the day you turned four months old, you cut your two bottom teeth. I didn’t even know you were teething because you never cried.

Then all at once—seemingly overnight—you stopped being easy, and you became hard. Not throw-big-tantrums hard, or run-from-me-in-the-mall hard, but squeaky-wheel hard. Nothing made you happy. You lived in a perpetual bubble of discontent and disappointment.

You were hungry for more than I could give: love, attention, energy. The right waffles, a bigger ice cream cone. Ten kisses before bed one night, and eleven the next. I didn’t know how to quench your thirst or quell your metaphorical hunger. Some days, I still don’t.

Looking back, I see maybe the timing wasn’t so perfect after all—that as Jack and autism’s demands grew and your oldest brother grew and once again, my stomach grew, you were lost in the shuffle of speech therapy and maternity clothes and mortgage bills and preschool.

In my mind, I think of Jack’s autism as a jar full of jellybeans. In his hand, he tightly holds all of the brightly colored candies: bright red rigidity and sticky perseverative purple. Yellow for the buoyant bounce of self-stimulation.

But you reached into the glass jar and stole a bean for yourself. When all of our heads were turned and no one was looking, you took dark green anxiety.

For the past four years, you have been so, so afraid, of everything from thunder to wind, zombies, and going upstairs in the house alone.

Jack had already experienced his crushing bout with anxiety, so I knew exactly what it looked and felt and smelled like. Yet, for the longest time, I didn’t believe yours was real. It wasn’t attached to a diagnosis, so to me it was simply a personality trait—a choice you were actively making to complicate my life.

Every time I gripped your sweaty palms during a rainstorm or looked up in the middle of the night to see you standing at the side of my bed, I felt a rising irritation. I fought a rising frustration.

Eventually, irritation and frustration gave way to panic. I cannot do this, I thought to myself.

I cannot take anxiety any longer please let him be normal I just need normal normal normal.

Ah, my middle child. What I needed you could not give and what you needed I could not provide. For this, I am sorry.

There is so much debate about how much the spectrum disorder affects a family. Some researchers insist it’s destructive and damaging because there isn’t enough love and attention to go around.

Others conclude that children within an autism family will grow to be more empathetic and giving and kind and caring.

Still more studies show it causes resentment and stress, that a family cannot possibly manage the relentless perseverations and stimming and tantrums without self-destructing.

I know it seems as though Jack gets his way and all of our attention. His music fills the house and his screams fill our ears and autism’s overwhelming needs fill our time.

Please trust me, that because of him, I can be a better mother for you.

I can feel your body curl against mine in the still of the night and hold your hand as you walk up the stairs and into your quiet bedroom.

I can see your anxiety.

I can understand all of the mistakes I’ve made.

See, for so long I wanted—maybe needed—for you to be in the easy one, but I think I just made it harder for us both. I know now that there is no such thing as an easy child or a hard child. There is really no such thing as normal.

Instead, there is the sweet continuum of time, broken up into moments. There are hard moments and easy moments, scary moments and funny moments and difficult moments.

Moments I’d do anything to take back, like the time I made you go upstairs to find your sneakers by yourself even though you were frantic and hysterical and afraid.

Moments I want to enjoy all over again, like the time you beat Daddy at chess and your face broke open with the widest smile.

And some moments, I cannot lie, there isn’t enough attention to go around.

Mostly, I want to take this one moment to tell you that I see you. Every day, I see you.

I don’t see a middle child. I see a dark-haired replica of your father, and our only child with his deep brown eyes.

I see your cute dimples, and your quick smile.

I see how much you love football and baseball and hockey and soccer. You like macaroni but you can’t stand spaghetti. You are quietly funny and yet quietly afraid.

I see you and I know you and ultimately, I want to be better for you.

And that, dear Charlie, is how I think autism affects a family.

Charlie

Charlie

 

What Happens When Your Parenting Styles Are Different?

My husband and I have a good marriage. Some days, I would even call it a great marriage.

You might say it’s a love story of sorts; I’ve known him for nineteen years, and we’ve been married for almost seventeen.

We went through undergraduate school together, then graduate school for me and dental school for him. We were so broke at one point we could barely afford to order pizza, and we lived in an apartment where you could hear the rats tumbling through the walls in the middle of the night.

We’ve come a long way from rats in the walls and now we can even order pizza with pepperoni, but we are in many ways the same two people we were back then. We laugh a lot. We like each other’s company, and we both think Rocky II is the best movie ever made.

I still find him as attractive as the day we first met—maybe even more so since he recently grew a beard and it looks really good on him.

But I have a confession to make. It’s kind of a secret, so I need you to come just a little closer. Bend your head to me, and I’ll whisper in your ear.

We are not good co-parents.

You know, the thing where two people are supposed to make decisions together and collaborate about their beloved children’s well-being and future and whether or not they should have another cookie even though they didn’t eat a single string bean at dinner?

Yeah, that.

After parenting together for twelve years Joe and I, well, sometimes we aren’t on the same page. We’re not even reading the same book. In fact, we barely speak the same language.

I think this is mostly because I am right all the time.

And Joe thinks I’m wrong and he’s right.

But really, I am right—all the time.

If we ever get a divorce, it will be because of the kids. It will be their fault. I mean, if we didn’t have kids, what would there be to fight about? How late we should sleep on the weekends? Where to go for dinner? What to do with all of our extra money since we don’t have to spend it on diapers and cleats and college funds?

And I’m not going to play it like some made-for-television special either, and say things like, “You had nothing to do with our divorce. Mommy and Daddy just needed a time-out!”

Nope, I’m going to call all five kids together and tell them bluntly, “Of course it’s your fault we’re getting a divorce! Remember when kept us up all night and we were so tired we could barely see straight, and then we had to toast waffles and wipe your noses and try to figure out the rules for Monopoly?”

It’s hard, this child rearing thing. Like climbing a mountain hard, especially because Joe and I each think we know where we’re going and the best way to get there. We both want to be the tour guides.

On paper, it’s no surprise that we struggle to co-parent. The numbers are not in our favor.

There are five of them and two of us.

We had three kids in diapers. Twice.

One in fifty-five children are diagnosed with autism. We have one of them. His name is Jack.

Eight out of ten families with autism end in divorce.

Sometimes, it’s little things; Joe lets our daughter wear her pink cowboy boots to school after I’ve already told her she needs to wear her sneakers.

I laugh at a sassy joke 12-year Joey tells, but from across the table I see Joe’s face tighten in irritation.

I tell Jack he doesn’t have to finish his math homework, and Joe tells Charlie he can skip a bath.

No matter the disagreement, the soft, whispery subtext is always the same.

I told her no and you said yes and he’s being rude and he should learn to finish his work and can’t you just let it go?

Why are you undermining me?

Are we in this together or not?

Then, there are the big things that turn the mountain into an explosive volcano right in front of our eyes.

For example, last week I was pretty mad at Jack. He had worn down my last nerve blaring the Beatles all afternoon and flipping out because his brother ate the rest of the ice cream and then he screamed a very bad word that begins with an “F” and rhymes with “duck”.

When Joe heard me get mad, he felt he had no choice but to also get mad. I didn’t need him to get mad. I needed him to tell me to go upstairs alone and read my People magazine and chill out for a few minutes because we all know how much Jack loves the Beatles and ice cream and we’re working on the swearing.

The subtext in these situations is pretty obvious, too.

I don’t need you to interfere.

I am showing you my support by also getting mad. 

I don’t need your support I need you to find ice cream.

We are not together.

I am alone.

In terms of organization, Joe and I have a pretty specific division of labor when it comes to our family workload, according to what seems to be our natural skill set. He handles big school projects and I oversee homework and math facts and spelling quizzes. I handle colds and boogers, and he is in charge of anything puke-related.

I cook dinner, and he cleans the kitchen.

He supervises bath time, and I check the toothbrushes to make sure they were actually used on teeth.

I will readily admit, from helping an uninterested 7-year old make a Rube-Goldberg for the annual school Invention Convention to wiping down the bathroom with Clorox Wipes after someone missed the toilet, Joe kind of drew the short straw when it comes to family responsibilities.

In the fact, one night after a particularly vicious bout of the stomach bug, 5-year old Henry sat down in Joe’s lap after dinner and announced he will never be a father.

“Why not?” Joe asked him.

“Because. I don’t know how to rub someone’s back when they throw up. Like you do to me.”

Generally speaking, we both want the same things for our family; happy, well-balanced, polite kids who will eventually move out of the house. But our styles and temperament are very, very different.

In terms of parenting styles, I would say Joe falls into what I’ll call Category A. In Category A, kids should listen and do what we ask and we are the parents and therefore in charge.

I am in Category B. This category is a little more flexible. It takes into account children who are overtired and 12-year olds who want to test their comedic wings. A lot of times, people in Category B feel confused about who is in charge. Is it the 6-year old demanding a new Transformer? Or maybe the 12-year old who wants to watch a PG-13 movie? We get tired easily.

See what I mean? Parenting. Hard.

Then, there is our temperament.

Joe has exactly two speeds. Ninety percent of the time he is an affable, lovable, fun, silly, affectionate guy. The other five percent, well, let’s just say someone has pushed his buttons just one time too many. He is loud. He is expressive. He is no-nonsense.

I have many, many speeds. I have my tired speed and my motivated speed. I have patience, and then sometimes I have no patience. I have a consistent speed, and a let-things-go speed. I have an ice-cream-for-dinner speed combined with a we-should-eat-more-fruit speed.

I can go along all la-di-da and then, with no warning whatsoever, have a psychotic snap over something as innocuous as a towel someone left on the bathroom floor.

And autism unravels us. I wish I could say we’re getting better—more experienced—in parenting this boy, but the truth is every week, maybe every day, brings a whole new set of worries and challenges and behaviors.

How many more years will it take until we figure out what each of us needs? How many more arguments over homework and ice cream and cowboy boots will we have to endure? Will we ever unravel autism’s tricky knots?

The answer is, I do not know.

I do know this. Parenting is hard because it is a rich combination of puke and chaos and temperament and style.

It is A plus B minus five times two. It is one in fifty-five eighty percent of the time.

It is exhausting and complicated, heartbreaking and maddening. It’s wanting to be right but feeling as though you’re wrong.

It redfines us all, but it especially redefines love stories.

Once upon a time, I thought a love story was a dark-haired college guy hoping he had enough money in his wallet to buy pizza with his fiancé.

I thought it was first kisses and wedding dresses and snuggling together in an apartment with rats.

I thought it was Rocky and Adrienne.

But it’s none of these.

It’s a dark-haired man with a beard bending tenderly over a little boy, and gently rubbing his back while he throws up in the bathroom.

“Daddy. I hope I can do it like you when I have kids too.”

Joe and Henry

Joe and Henry


 

 

My Words of Wisdom

Last Monday it was raining out, so I decided to drive down to the bus stop and pick up the kids. I sat in my car and surfed the Internet, and I came across a link called, “100 Wise Words for Everyone,” written by an economics teacher for his high school seniors.

I had a few minutes to spare, so I clicked on it.

I expected it to explain concepts about how the world has limited means and resources like clean water and oil and wheat to meet the population’s unlimited demands and it’s called scarcity and that’s why we have a market system.

(This may or may not be an actual economic concept.)

Instead, I was pleasantly surprised to read some funny, precious gems about when to get a haircut, how to jump in a pool, and why you should be patient with those who work in airport security.

Aside from the mandatory class I had to take in graduate school, I never really studied—or understood—economics very well. That stuff’s hard, people. In fact, I’m not even going to tell you what I got in the class because it was my worst grade and it’s kind of embarrassing.

As I drove back up our long driveway with a van full of kids and backpacks, I wondered if I had any words of wisdom of my own.

What have I learned from sixteen years of marriage, twelve years of motherhood, and almost forty-one years on the planet?

What does the little voice in my head whisper when I’m panicked or tired or bored or lonely?

What do I try to remember when I feel stress?

What do I hope to teach my kids?

When I walked into the house, I jotted down the first things that came to my mind.

If it doesn’t fit in the store, it’s not going to fit at home.

There are more than two sides to every story: your side, my side, and what really happened.

My mother always told me to never write anything down that I don’t want the whole world to read. I dedicated my second book to her.

I appreciate irony.

The more I teach my kids to do around the house, the less I have to do. This leaves me a lot more time to watch re-runs of Mad Men.

It’s never too late to start the day over.

Someone once told me that chocolate chip cookies don’t turn out as well on a rainy day. This has something to do with the butter but I don’t know what exactly.

It’s okay to be bored.

It’s okay to be tired.

It’s okay to be sad.

One time I was telling our psychologist about a fight Joe and I had. It was when he needed back surgery a couple of years ago, and I was mad because he wouldn’t listen to me about the best way to recover.

She asked me why I was going straight to anger, instead of letting myself experience the obvious feelings of fear and anxiety and worry.

For me, this was a game-changer.

My kids have a game called Marble Run, where they build courses with chutes and ladders and ramps, and then they race marbles down them.

My nine-year old, Charlie, always makes a valley between two ramps, so his marble flies down the first ramp and hopefully has enough speed to make it up the other side. Whenever I watch him do this, I am always reminded of my fight with Joe about back surgery. Like a shiny silver marble, I didn’t want to sit in the middle.

Now, whenever I am tempted to go straight to anger—whether it’s because Jack is obsessing about how much he loves soda and can he get a soda at lunch and soda is so great and how about soda and did I know soda was invented in 1676, or because my kitchen is a mess, or Joe isn’t home when he said he would be—I picture that marble sliding cleanly in the valley, and I try to slow my momentum so I don’t fly up the other side.

Because, really, it’s never about the soda.

It’s never about running late. It’s never about cereal bowls on the counter or Cheerios stuck in the drain in the sink.

It’s about watching my son’s mind caught in autism’s steely grasp, while my stomach prickles with fear.

It’s about how, at the end of a long afternoon of getting five kids through homework and answering trivia questions about soda and sweeping Goldfish crackers off the floor for the thirty zillionth time, I feel restless. I feel antsy. I feel lonely for my husband.

I love a funny joke, a good story, and a compelling book.

Forgiving a person does not give him or her permission to hurt me again.

Don’t stare. Ask. If you ask, I will tell you.

I will tell you why he jumps. I will tell you why he grunts, and shouts, and still sucks on his two middle fingers when he’s agitated even though he’s eleven years old.

I will tell you. In fact, I want to tell you. I want to tell you our story of autism and five kids and the fight and the fatigue and the joy and the fear.

I am a better mother/wife/human if I start my day by working out.

Ladies, always assume you can get pregnant. Gentlemen, always assume she can get pregnant.

Because my husband Joe and I, well, we didn’t make these assumptions. And long story short, his name is Henry.

I don’t fear aging. I fear not aging.

It’s okay to go to bed angry. The words Joe and I exchange when we’re overtired and overwrought are infinitely worse than the discussion we have in the morning.

I think the smallest traditions make for the biggest memories.

We eat our favorite family dinner—chicken parmesan and garlic bread—by candlelight.

We begin meals with a prayer and we tie balloons to the mailbox for birthdays.

When we can, we take the long way home from the elementary school so we can see the horses munching their grass on the farm down the street.

My relationship with my God is my own. It is not for anyone else’s opinion, or judgment, or advice.

I believe there are some lessons that should only come from home; nutrition, sex, finance, and religion are among them.

I live with small children and a puppy, so I never assume it’s chocolate on the floor.

It’s okay to put my marriage’s needs ahead of my children’s needs.

If I want a cupcake, I eat a cupcake.

I never imagined, even once, the amount of joy this silly little puppy would bring to our home.

Dancing always makes me feel better.

It’s true that I don’t really understand the principles of economics very well. I don’t understand scarcity and demand and market place and marginal benefit.

But I do know there is a limited supply to my own life’s relentless demands. There is a shortage of energy and sympathy and patience and awareness. There is a scarcity of sweet, golden, buttery time.

Scarcity requires choice.

I choose to explain the world to Jack and Jack to the world so they may each be a little kinder to one another.

I choose to make brownies instead of chocolate chip cookies when it’s raining out, and I choose pink balloons for my daughter Rose’s birthday and green for Joey’s.

I choose to see God in my own way.

I choose to sit like a slow marble in the midst of panic instead of reaching up the ramp for anger. And if that fails, I reach out and pet our puppy.

Maybe this is what economists mean when they talk about a market system.

(B-. I got a B- in economics.)

(Full disclosure: this wasn’t my worst grade. Statistics was.)

(C+.)

(I may not be smart.)

Our puppy, Wolfie

Our puppy, Wolfie