The Things I Know Because of Autism

My second son, Jack, was diagnosed with autism when he was 18 months old. Now he’s almost eleven, and let’s just say there are certain, well, unique parenting skills that I’ve learned in the past decade or so.

Because of autism, I understand the acronyms for ASD, IEP, and PDD-NOS.

I know what sensory processing disorder, self-direction, executive functioning, joint attention, and echolalia mean.

Some days, I don’t even notice when I’ve answered the same question fifty-seven times in a single hour.

“Mom. The cake for Henry. His birthday. I have to make the cake blue. How will we make it blue?”

“Yes, Jack. We’ll figure it out.”

The sounds of someone jumping, grunting, spinning, hopping, and whirling are as familiar to me as my own heartbeat.

I know what it feels like to have someone stand over your bed at 6:03 every single Thursday morning chanting, “Waffles. Waffles. Waffles today.” Everyone in our house knows that Thursday is Waffle Day.

I marvel how someone can remember the exact date he last ate a hotdog was July 23rd, 2013, but he can’t remember that 12 x 3 = 36.

But I also know this has nothing to do with intelligence or how smart he is.

I am hard to embarrass.

I have a love-hate relationship with Thomas the Train, Elmo, and Baby Einstein videos.

Right now, Jack wants to own a bakery when he grows up. This is all he talks about. I have learned to listen to his dreams with a combination of tenderness and apprehension.

Because although he can crack the eggs and measure the oil and stir the batter, his attention wanes and he usually wanders off before we’ve even prepared the pans. His failure to attend to a task for any longer than a few minutes at a time prevents him from finishing most projects.

I know what failure to attend means.

I have listened to scripting for TV shows, commercials, ads for car insurance, and lyrics on the radio for hours on end.

“Nationwide is on your si-ide.”

I know what scripting means.

I know how painful it is to watch a child live in a bubble of perpetual, unnameable disquiet.

I know too well the cruel irony of time. In the beginning, we raced to beat the clock; to hurry up and get the speech therapy and the evaluation and the diagnosis because time was running out. Then, waiting. The long, silent stretches of waiting, waiting, waiting—for the first patty-cake, the first pointed finger, the first word.

My heart can swell with love and break into a thousand pieces at exactly the same time.

I have learned to trim fingernails like a super-sneaky stealth ninja.

I know where the melatonin is in Walgreens.

I know what it’s like to have the kid who bites everyone in preschool.

At one point, we swore Jack was deaf, and if I had to admit it, we were actually a teeny bit disappointed when we realized he could hear just fine–especially if one of us was opening a box of animal crackers from three rooms away.

I once told a social story about how to use a public restroom.

I have scoped out our basement and considered adding another bathroom down there, just in case.

I have shared a meal with a person who will not eat food that is too yellow, too mixed, too round, too bumpy, or too smooth.

I am what I like to call a tantrum meteorologist; within a fraction of a second, I can sense the changing winds and drop in barometric pressure that herald a nuclear meltdown, usually over something as benign as static on the radio.

I’ve repeated “Look in my eyes,” ninety million four hundred and sixty-six times.

We bring headphones to the fireworks display on the Fourth of July.

Other days, I do notice when I’ve answered the same question fifty-seven times in a single hour, especially if it’s before I’ve had a cup of coffee in the morning.

“Mom. The cake for Henry. I have to make the cake blue. How. How will I make it. How will I make it blue. How.”

“JACK!  We aren’t making the cake until this afternoon. Stop obsessing about it. You are driving me crazy!”

I know self-loathing.

I know shame.

I know what it feels like to fail.

I love someone with autism. Some days this is my very hardest job.

I know when Rosa Parks died, how long it took to build Mount Rushmore, and what year Skippy started to make peanut butter.

I also know the quiet joys of my unusual son’s heart; the right song at the right volume on the right station during long car rides, any kind of Disney movie, and planning a blue cake for his younger brother’s birthday.

Also researching peanut butter—for this week, anyway.

I know what it’s like to try and hug someone who is as skittish as a scared cat. More than once, I’ve tiptoed into a quiet bedroom after everyone is asleep to stroke his soft, tender cheek. It’s the only time he doesn’t squirm from my touch.

Sometimes, I wake up in the middle of the night and worry about what will happen when I die.

I have watched my husband grieve the child he expected to have—the boy who would wave to him from the school bus and play catch in the yard and curl up next to him on the couch to watch football games on Sunday afternoons—and adjust instead to the one we do have.

I know what it’s like to have a boy who is difficult to describe. He is the richest combination of tenacity and rigidity and delight and mystery. He is like no person I have ever known.

I have a hard time watching parts of Rainman.

I’ve heard all the metaphors:

“If you’ve seen one child with autism, you’ve seen one child with autism.”

“Autism is a long-distance marathon, not a race.”

“When you raise a special-needs child, the lows are lower but the highs are higher.”

To me, these simply mean that one cold winter morning, I will find myself standing alone in my kitchen, clutching a box of cake mix that I snatched out of my son’s hand because I could not bear to see him flapping his hands and waving the box for one more single second.

It means sometimes an autism marathon is nothing but a long, lonely march.

But I know how to find gifts in the most unusual places; a quiet smile, a quick kiss in the morning, the briefest glance into his blue eyes.

I know how to begin again. I know how to rally.

“Mom. It is the afternoon. We have to make the cake.”

“Yes, Jack. Let’s take out the eggs. This time, I want you to grease the pans.”

I know that at the end of the day, beneath all of the stimming and scripting and Skippy, there’s this child. And somehow, I have to fit him in with the rest of our family and the school and the church and the world.

I have to figure out how to help him be a baker.

And when, after a long, hard day of frustration and forgiveness, short tempers and broken eggs, I take the first bite of a lumpy, colorful, lopsided blue cake, and I know hope.

This I know, because of autism.

Jack and 6-year old Henry.

Jack and 6-year old Henry.

 

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I Know What Causes Autism

Last week I was surfing the Internet and came across a headline proclaiming autism and circumcision are linked. I couldn’t help myself. I laughed out loud.

In no certain order, I have read the following explanations for autism over the years:

Autism is caused by mercury.

Autism is caused by lead.

Autism begins with poor maternal bonding.

Certain pesticides may trigger autism.

Plastics.

Gluten aggravates autism spectrum disorder.

People with autism should eat more strawberries.

Too much automotive exhaust is a leading cause of autism.

Chemicals found on non-stick cookware may trigger autism.

The one about maternal bonding is sort of painful for me. The truth is, I did have a hard time bonding with infant Jack. The little guy shrieked and whined and cried for a solid year. He started sleeping through the night at six weeks, and stopped at three months.

I was exhausted, and Joe and I were fighting constantly; bickering and arguing and long screaming matches. For the first time, I could feel my marriage slipping away from me like sand through my fingers.

And my first child, Joey—sweet, uncomplicated, good-natured Joey—was a year old at the time. His easy nature only highlighted his new brother’s fussiness.

But I am certain there is no one on earth more bonded to this boy now, and guess what? He still has autism.

I am happy to announce that I do know what caused Jack’s autism, and without further ado, I’d like to tell you.

Wait for it.

It’s kind of a big deal.

Drum roll, please.

Jack has autism because, as his 5-year old brother Henry says, he was bornd-ed with it.

Yes, I believe autism is a genetic condition. I believe that somehow Joe’s DNA mixed up with my DNA and together we had a child who thinks Wednesday is orange. Perhaps his unique genetic coding makes him more sensitive to things in our environment like lead and mercury and plastic.

I don’t know about the strawberry thing though.

(For years I blamed Joe’s side of the family for the autism gene. But a few years ago I went to a funeral for someone on my side of the family, and I looked around the room and was all like hmmmmm.)

I was in a coffee shop last week and a woman came up and introduced herself to me. She said her daughter, Lily, is in Jack’s fifth grade class. I nodded and smiled, took my cup of coffee—ok, ok, and my cupcake—from the counter and turned to leave.

“Wait,” she touched my arm. “I just wanted to tell you something. Lily told me that a boy called Jack weird the other day in class.”

I cringed. “Oh, well, yes. That happens.”

“Lily said she told the boy that Jack isn’t weird. She told him he’s exactly the way he’s supposed to be.”

You can see my dilemma. If I start running around declaring autism an epidemic and screeching about how we need to find out where it’s coming from and who started it and how to cure it, well, that sort of contradicts the whole message of acceptance and tolerance and open-mindedness.

This fragile glass house we’ve been working so hard to build over the past decade will explode into a thousand tiny pieces.

But on the other hand, it sort of is an epidemic. Other families are going to have babies and maybe they would like to have some idea of how to prevent this tricky spectrum disorder from striking. My own children will have their children, and if autism is indeed caused by automotive exhaust, it would be good to know so we could all buy electric cars.

At the same time, I don’t want to focus so much on the what and when and where and how that I forget about the who.

Because I don’t care where it came from.

But I am kind of curious.

It doesn’t matter to me why Jack has autism.

But it might be good information to have.

There’s nothing wrong with him.

Maybe there’s a little something wrong with him because he just spent the last forty-five minutes talking about all the different kinds of gum that Wal-Mart sells.

I wouldn’t change a thing.

I might change a few things.

I celebrate autism and all of its spectacular wonder.

I hate autism because it makes my son talk about gum and Wal-Mart so much.

He is broken.

He is whole.

Autism is no one’s fault.

Maybe I should stop using Tupperware and make him eat strawberries even though he hates them and re-paint the house to make sure there is no lead on the walls or the windowsills.

Maybe I should throw away our frying pan.

Maybe I should have loved him harder, deeper, more when he was a tiny swaddled baby squirming in my arms.

Maybe this is my fault.

As you can see, my feelings about Jack’s autism diagnosis are as complicated as a prism with a thousand colors and angles and light. Some days, my doubts are soft whispers within my heart, other times it’s as though someone is shouting in my ear.

I am not a scientist. I am not smart enough for that. But I am a mother. And although I am not really smart enough for that either, I do know autism from that angle. I know the rigidity and the obsessiveness and the rage over having an aide in school. I know the disappointment and the fear. I know the quiet longing that comes with being different or weird, because I see it every single day.

When you live with someone who has autism, you say the phrase for now a lot.

For now, the radio is on the right station.

For now, he’s not screaming.

For now, he’s sleeping.

For now, he’s safe.

So, for now, I’m going to believe Jack’s autism is because of DNA and RNA and heredity.

For now, I will try to add broad splashes of green and blue and purple and orange to science’s black and white brush strokes. Together, we will fill in autism’s canvas until a clearer picture comes forward.

I don’t know exactly what that picture looks like yet, but I like to imagine it is a utopia of sorts; the perfect intersection of science and people. There are strawberries and puppies and lots of peppermint gum in Wal-Mart, the kind in the blue container.

There are tall, blonde girls named Lily and boys with glasses named Jack.

And if you look hard enough, you can see a glass house in the distance—almost on the horizon. It glints and sparkles in the sunlight, and it is breathtaking.

If you look closer, you will see a sentence etched into the front door. This one sentence—this collection of eight words—well, they are very, very big.

They are a shored wall against a flood of uncertainty.

They are a million bright stars in an otherwise long, dark night.

They are peace and forgiveness, power and pride. They are everlasting absolution.

The first time I heard them, I was in a coffee shop buying a cupcake.

“He’s exactly the way he’s supposed to be.”

Baby Jack

Baby Jack

 

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My Lonely Boy

“Mom, why I am. A lonely boy.”

It was a typical late-afternoon in our house; homework was finished, Jack was upstairs listening to his music on the karaoke machine, and the other four kids were outside playing tag with the little boys next door. I was trying figure out if I should make dinner or convince Joe to take us out to our favorite Mexican restaurant.

But then Jacked interrupted my deliberations of burritos or pork chops with his bombshell. With a single question, he took my breath away.

“What, Jack? What do you mean?”

“Nothing.” He turned and stomped away.

I mean, we knew this was coming, right? If I had to be honest, I’d have to admit this was always my ultimate concern—not that he wouldn’t speak in sentences or become potty trained or learn to put his snow pants on by himself, but that he would never fit in.

I feared the aching loneliness that accompanies spectrum disorder the most.

He’s terrible when it comes to playing with other kids. He is so stinking bossy. He never wants to be “it” in tag or hide-and-go-seek and he screams if things don’t go his way. A lot of times, he quits in the middle of the game and wanders off on his own, leaving the team short a player.

It’s like watching a finely tuned orchestra, where everyone is playing and singing in harmony. But there is one musician who is a little different. He wears a turtleneck instead of a dress shirt, and in the middle of the performance, he stands and shouts that Bing Crosby died on October 14, 1977 and it was a Friday.

You can’t help but cringe, seeing that person, because he is so completely out of sync with the others.

But this musician, he knows the mechanics of music. He knows how to hold his instrument and push the keys and read the notes. It’s the subtle nuances of the symphony that he misses; the crescendos and the chords and the quick change in tempo. He doesn’t understand the joy of playing together.

My son is lonely.

I went to a conference a few years ago, and the speaker—an accomplished psychologist—told the audience that, for people with autism spectrum disorder, social situations are like walking on icy pavement using only stilts.

“First, we need to dry up the pavement,” she advised. “And then we need to teach stilt-walking.”

This didn’t make sense to me. It still doesn’t.

Does the ice represent fear? So we need to dry it up and take it away? Are the stilts like the rules of a game, and Jack has to try to learn to balance?

Every time I think about it, my head hurts.

“Jack, come back here! I want to talk to you!”

He turned around and started counting to ten. This is his charming new habit when you try to talk to him about something and he’s lost interest. It isn’t annoying at all.

“Jack, what do you mean—“

“One, two, three, four—“

“Jack, I am trying to talk—“

“Five, SIX—“

JACK!”

At home, it’s different. We kind of get him. We are all—even 5-year old Henry—are starting to see that behind the rudeness is fear, and beneath the counting is a boy who is stalling so he can search for the right, most relevant words.

I mean, I wish you could see my two oldest boys in the morning before school. If it isn’t Waffle Day Thursday or Pancake Day Friday, then Jack insists he wants a “Joey omelet. For me Joey will cook.”

After the three younger kids get on the bus, Jack sits at the counter while his 11-year old brother fries him an egg.  And they talk.

“Joey. Joey. Not very wet. Don’t have the egg wet.”

“Jack, I know. I know how you like it.”

“Joey. What was it you liked the most, in fifth grade.”

Joey doesn’t rush his younger brother. He doesn’t correct his unusual speech pattern or prompt him to make eye contact. He waits for him. And sitting at the kitchen counter while Joey cooks for him, Jack is finally in tune with another person’s rhythm.

For that half hour, he is not lonely.

But then he climbs on the crowded bus and heads off to school. His day is full of conversation and chatter, changing in the locker room and lunch in the noisy cafeteria. All day long, he is working so hard to balance the sounds around him with autism’s inner metronome.

By the time dinner rolls around, his social capital is all used up, and as soon as he finishes his last bite of ice cream, he disappears into the recesses of the house to listen to music and build long, strange playlists.

At first this was painful for Joe and I. We’d call him back down the family room to watch TV with the rest of the kids or demand he turn his music off and talk to us. But over time, we’ve come to respect his need for distance. He is simply finished for the day; this musician cannot play one more note.

The next evening, after the homework was done and the snacks were eaten, the other four kids started to put on their snow gear and head outside. I saw Jack start to slink upstairs with a CD in his hand.

“No, Jack. Tonight you are going outside for a while.”

“No! I can’t play!” he screeched.

“Yes, you can. Just for a few minutes.”

“One, two, three, four—“

JACK!”

He trudged back down and reached for his jacket. But after a few minutes outside, he rushed back into the house.

“Jack!  You need to stay out longer—“

“I need. My BOOTS. The driveway is with ice.”

“Okay buddy, but be—“

“Joey. He said. I have to be it. It is my turn to be it.”

I watched him shove his feet into his black snow boots, and once again I thought about my lonely musician; marching, marching, marching to his own beat.

I don’t know how to repair the small tear in his heart before it turns into a large, gaping hole. I don’t know how to make sure my lonely boy doesn’t turn into a lonely teenager and eventually, a lonely man.

But I think might be getting closer to the stilts thing.

If the ice is too slippery, then you should wear boots.

And if you don’t understand how to balance on stilts or play tag or make the perfect egg, just ask your big brother. He’ll help you walk high and tall and straight on the pavement. He’ll teach you the rules of the game and keep you moving in time to the music.

With him nearby, you’ll never be lonely.

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These pictures are about five years old, but they are my very favorites of both boys.

These pictures are about five years old, but they are my very favorites of both boys.

Big News!

I’ve been waiting and waiting to tell everyone my exciting announcement.Cover

(No, I am not pregnant. And whoever just said that is in big trouble.)

Although it does feel like I just delivered a baby, except minus the ooky delivery stuff and the nursing and the teeny little newborn onesies.

Actually, I it’s like I delivered TWO babies, maybe twins, but not the kind that look exactly alike.

Alright, I’ll get to the point.

On January 20th, Jessica Kingsley Publishing is re-publishing “What Color Is Monday? How Autism Changed One Family for the Better.” I am so excited to share this, because I had to keep it kind of a secret for a long time.

The book has a few updates and a new look, and will be available throughout the SIWHA Final Covercountry and as an e-book. They hope to translate it into different languages, and every time I think about the part where I yell at that poor blind man to move his dog being read out loud in German or Italian or Spanish, I laugh out loud. I can’t help it.

I also have a second book, available in February, called “Someone I’m With Has Autism.” This is a collection of the blogs with some new material, and a drawing by Jack’s 4th grade teacher, Mr. Hines.

This book was also kind of a secret, mostly because we had such a hard time trying to figure out the cover.  Then, at the 11th hour before the final draft was due, our long-time babysitter and family friend managed to take this picture of Jack and Wolfie.

I just love it.

I Know Who You Are

Listen, I know who you are. And although I can’t see or touch or feel you, I have looked you square in the face for the past ten years.

You are a mystery—an enigma—and you baffle teachers and therapists and coaches and bus drivers. You baffle me. And yet, I feel I know you almost better than I know myself.

You are smoke and mirrors. You are illusion. You are the last kid out in a dodge ball game; ducking and weaving and escaping until the rest of the players give up and go home.

You are the panther who demands melatonin for six hours of sleep at night.

You are the cruel snake of anxiety, winding and curling around my child’s soul, whispering nonsense about dogs and wind chill factors.

You are the thief trying to steal my son from me.

You are Autism.

I hate you.

That’s right, I said it. Autism, I hate you.

I hate the way you make him touch all of his food and dip his fingers in every glass of milk before he can take one taste.

I hate that he won’t play sports because of you.

I hate how lonely you make him.

I hate the way you force him to painstakingly search for words while the rest of the world rushes over him in a tidal wave of jokes and irony and dialogue and language.

I hate that his poor brain is always turning, churning, obsessing, racing from maps to music to when Smucker’s first made strawberry jam. I want to scream at you to leave my son the hell alone; to let his mind rest for just one second.

I mean, honestly, he doesn’t even like strawberry jam.

And how about his body? Why can’t you just let his body be still? Watching you operate his arms and legs and hands, making him stim and jump and grunt through every room is like watching a puppeteer control the strings.

I hate the way you make me feel. With you around, I am stupid and tired and useless. I am unsure.

Last week our family of seven drove to Connecticut to visit my sister. Please, don’t even act like you don’t know what I’m talking about, because I know you were there.

I know because for almost the entire two-hour drive, my sandy-haired son sat in the second row of our minivan and demanded we play and re-play the same three songs over and over, at precisely the same volume. If it wasn’t the right song in the right order at the right level, he shrieked like a madman.

You drove all of us crazy.

I want to tell you a secret. I know you think you keep all the secrets, but I also have one: every once in a great while, when I’m frustrated and lost, I go up into our bedroom and I cry. I sit in the big leather chair in the corner by the window and I cry for the boy who wants to live alone but may not, who wants to cross the stage during graduation and have play dates and open his own bakery even though at ten years old, he doesn’t understand money. I cry for his naiveté and his innocence, and the way his heart and mind cannot keep pace with his tall, growing body. I cry for the boy who might have been.

Me and you, we spend the day engaged in a tug-of-war, except instead of a long rope, we each hold of one of his hands. I pull him toward me—into a world full of high school diplomas and karate and dollars and cents—and you yank him backwards into a dark spectrum abyss where apparently Nicki Minaj holds concerts around the clock.

About an hour before we got to my sister’s, you released your hold over my son and you let him sleep. When I looked into the backseat and saw how his face had relaxed, his breathing settled and his eyes closed, I felt grateful he could rest.

But you woke with a vengeance ten minutes from her house.

“Why? Is the radio off? Where. Are my songs. Turn them on turn them on turn them on.”

And once we pulled into her driveway, you and I began our contest of tug-of-war once more.

“Her dogs. The dogs! I don’t want to see them.”

“Jack!  Come on! You aren’t afraid of dogs anymore, remember? Now that we have a puppy?”

But you couldn’t let it be, could you, Autism?  You sidled up and grasped his fingers.

“No,” my 10-year old son whined and cried in his unusual grammar. “No dogs! No dogs! Put away them! Into the basement.”

After about two hours at my sister’s house, we both grew tired. I don’t know about you, but I had a headache.

I could feel you, sitting next to me on the couch watching all of kids play and dance and open presents. I could practically hear your ragged, uneven breathing. But for the first time all day, we each let go of his hands and stepped away.

And as we slumped against the cushions, I noticed her dog—a big chocolate lab with a graying muzzle—lying in the middle of the floor. I saw my tall boy step carefully around him at first, then over him, then plop down next to him with a sigh.

And I realized that I can’t live with you and I’ll never live without you, because I know you aren’t going anywhere.

And neither am I. You must believe me, Autism, when I tell you that I will never pack up my ball and go home.

But sitting with you on the tan couch in my sister’s living room, I thought that maybe, maybe, we can be friends. Tentative, reluctant, quiet, unlikely friends.

You are giggling now, Autism, I know you are. You are smirking and grinning in the dark corner. Your eyes are shining at me like the smuggest Cheshire Cat. You know. You know I could never hate you.

Because, like the quintessential tug-of-war, I too am pulled in two directions at once.

For all the things you make him—rigid and bossy and lonely and sad—you also make him funny and lovable and charming and smart. In some absurd way, you make him whole. To love him is to love you, too.

And oh, how I love him.

Once in a while I cry for the boy who might have been, but every single day I smile for the boy who is. I smile, laugh, chuckle, giggle, and love.

I know who you are.

You are the quiet joke at the dinner table that takes everyone by surprise.

You are the quick one-armed hug from behind and the first bite of sweet chocolate cake.

“Mom. This one. I did the frosting on myself.”

You are opportunity and risk and chance. You are possibility and hope. You are progress.

You are the 10-year old boy in a red turtleneck, his arm slung casually around a big, gentle dog.

You are Jack.

In peace and friendship,

Jack’s Mom

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