To Duff at Ace of Cakes

Dear Duff,

A couple of weeks ago I used one of your mixes—specifically, the tie-dye one—to bake a cake with my 10-year old son, Jack. I noticed a part on the box where you asked people to write to you about their stories and experiences Tie Dye cakeand loving family moments.

I figured, why not? Maybe we’d win some kind of prize, or even better, some free cake.

But before I get to us baking the cake, I have to give you the back story.

It was Super Bowl weekend, and my husband, Joe, was in Las Vegas visiting his brother. I was home with our four boys and one daughter.

On Friday night I could not sleep a wink. It was very, very windy here in New Hampshire and I was afraid it would actually blow the house down. I kept getting up to check on the kids, and around 2:00 am the alarm in the house went off.

I’ve never actually heard our alarm go off in the middle of the night, but when it does, it apparently shouts, “Intruder. Intruder. Please exit the premises.”

I sprang out of bed and ran down the stairs, my heart racing. My ivory silk nightgown was streaming behind me, and my wavy blonde hair was loose and flowy.

All of this is exactly true, except I was wearing a baggy blue tank top from the Gap outlet that cost $3.00 and a pair of gray sweatpants with a hole in one knee. And my straight, baby-fine hair was standing perfectly on end because I’d gone to bed with it wet. It is blonde though.

Turns out a door had just blown open by the wind. No intruder.

The next morning, we had three basketball games. I cheered and clapped and chatted and smiled and waved, all the while dreaming of the nap I was going to take as soon as I got home and put on Despicable Me 2 for the kids. But when we walked in the door a couple of hours later, the house smelled horrendous. And I do mean horrendous. Typewritten words on a page simply cannot do this odor justice.

Turns out our puppy, Wolfie, had a little, uh, problem in his crate. When I let him out, he did that wet-dog shake that dogs do when they get out of the lake or the pool or a bath. Except he wasn’t covered in water, Duff. It was not water, and after that adorable shake, the not-water was on the walls and the chairs and the kitchen cabinets.

By the time I gave Wolfie a bath and took the crate apart and washed it down and cleaned the cabinets and barricaded him in the mudroom so he wouldn’t go all over the house, I never did get a nap.

Later that afternoon I had to get two boys to two birthday parties in two different towns. On the way home, I decided to make it easy and pick up Chinese food for dinner. We love Chinese food.

I could barely put one foot in front of the other by 8:00 that night. As I was ushering everyone into bed, my pink daughter, Rose, asked sweetly if she could sleep with me since Daddy was away.

“Oh, I don’t think so, honey. Let’s sleep in our own beds and get a good night’s rest.”

But while I was brushing my teeth, I felt a pang of remorse. Of course I should let her sleep with me, just this once. They’re only little for but a minute, Duff.

I tiptoed back into her room and bent over her bed. She was so sweet and drowsy. I stroked her hair and whispered, “Rose? Honey? Come on, come sleep with Mommy.”

We arranged our pillows and her special green blanket and snuggled. And just as I finally closed my eyes and dozed off, she sat straight up in the bed and got sick everywhere.

After I cleaned her up and stripped my bed and started the laundry and shushed the puppy, I asked her a question.

“Um, sweetie? Didn’t your tummy hurt when you were eating all of those boneless spare ribs?”

“No, Mommy. It didn’t start to hurt until I got into your bed.”

“Uh huh, I see.”

And that, my Ace of Cakes friend, is the back story.

The next day—Super Bowl Sunday—Jack wanted to bake the tie-dye cake.

Let me tell you a little bit about Jack.

He is the second of our five children.

He’s tall for his age, and he has blue eyes.

He likes his hair very, very short.

He is extremely literal, and he speaks in a kind of halting, robotic tone. He mixes words up sometimes.

He can tell you the address of every person in his class, even the teachers, because he memorized the school directory.

He has autism.

Jack wants to own a bakery when he grows up. Constantly, he watches cooking shows and scours in the Internet for recipes and taste tests and kitchen gadgets.

Mom. The Magic Chopper. As seen on TV. This we need.

He has a tendency to, shall we say, obsess over some things. Like baking. And cakes. As in, he’ll mention it forty-two hundred thousand times in one afternoon.

And if you think forty-two hundred thousand isn’t a real number, well, you’ve never met Jack.

It starts out almost like a warm, welcome rainfall.

Ah, yes. Cake! What a good idea, Jack!

And then the rain picks up. It begins to pelt your skin and sting your eyes.

Cake cake cake you said we could when will we make the cake the cake the cake.

Before you know it, it is thundering and lightening. The rain has turned to hail, and you want to hide under the kitchen table until the storm passes.

CAAAAAKE! How will we do it how will we make the colors how how when how.

The directions on the back of the box said to use every bowl in the house and mix up a million different colors, and as soon as  there is egg and oil all over the counters, then you drop a dollop of batter into the pan one at a time.

Once the first dollop spreads through the pan, you drop another on top of it and let that one spread.

So on and so forth.

Except Duff, it did not work. It did not work! The dollops of batter did not spread.

Just then, the winds began to change. There was a drop in barometric pressure right there in my kitchen. And Jack became the human tornado; jumping and flapping and screaming.

Not working it is wrong wrong wrong.

I am so lost in moments like this. Nothing—not diarrhea shooting out of a small puppy or fifty-five basketball games all at the same time or a sick, feverish little girl—unmoors me the way autism does.

You see, with my son, the stakes feel so very high.

I wanted to take him by the shoulders and shake him and scream.

Stop it stop it stop it! It is only a CAKE!

At the same time, I wanted to seize the moment and teach it all: flexibility and confidence and perseverance.

I wanted to tell him that sometimes, the things we want the most in life—colorful cakes and bakeries and 10-year old boys who do not flip out over the least little thing–well, these are the very things that demand all of your patience, all of your love, all of your courage.

But mostly, I wanted to hide under the kitchen table.

I didn’t do any of these things. I didn’t scream or shake or hide. I was too tired for a teaching moment.

If his tantrum went on much longer, if his rage continued, I knew something precious and raw and real was going to break loose inside of me.

So I slid the pans in the oven and closed the door with a bang. “Jack,” I told him very firmly, almost harshly. “We will just have to wait and see. Go read the school directory for a little while.”

A few hours later, the warm rain began again.

Mom. The cake. We need to cut it.IMG_6833

I braced myself as he slid the cake-cutter through the frosting and lifted the first piece.

“It worked! It is a rainbow. Like for the box.”

And looking down at the colorful slice of cake on the plate, for the first time all weekend, I knew sunshine.

Duff, I’m guessing we probably aren’t going to win a cash prize with this letter, or a lifetime supply of cake mixes. But that’s okay.

I only hope you read our story. And the next time you mix up some batter and slide your cake pans into the oven, you’ll think of a young boy named Jack, who wants to be a baker just like you.

Best,

Carrie (Jack’s Mom)

Thanks, Duff!

Thanks, Duff!

Why I Wasn’t Afraid to Label My Son

Dear Jack,

When you were about year old, we saw a bunch of doctors and specialists to try and figure out why you didn’t talk or point or look at us. And at that time, many people told us not to rush to give you a label.

“Be careful with a label, because it will be on all of his forms and medical records,” one man advised.

“It will follow him for the rest of his life,” another woman warned.

See Jack-a-boo, people don’t like labels. No one wants to be limited or boxed in or classified. They especially don’t want to be pigeon-holed, which actually has little to do with a bird and more to do with compartmentalizing people into teeny-tiny, mutually exclusive categories.

But at the tender age of 18 months, the doctor diagnosed you with autism spectrum disorder, and from that point forward, you were labeled.

Honestly? I’m glad.

Now, I’m not saying I’m glad you have autism. I’m not really sure how I feel about that.

I’m just saying I’m glad we know you have autism. I’m glad for the label.

See, if you didn’t have this label, I would probably snap at you to stop jumping and rocking and flapping.

I would think you were naughty and rude and disrespectful.

I might rush you whenever you try to explain something to me in your halted, robotic speech.

Every day I would feel exasperated and frustrated and angry and scared. I might even feel embarrassed or ashamed.

Maybe we would hide in the house like we did when you were a toddler, avoiding play dates and trips to the library so I didn’t have to see all the other kids who could wave bye-bye and blow kisses and play peek-a-boo.

But now, we don’t hide. We go to the movies and to church and to restaurants and roller skating. We go on vacation.

Jack, you are labeled. And every day I feel exasperated and enlightened and aware and frustrated and thrilled and angry and scared. I feel protective and vulnerable and inspired.

However, I never, ever feel embarrassed or ashamed.

(Well, I might have been a little bit embarrassed the time we went to see Maleficent and you announced, “We don’t need to BUY your candy. We have some HIDDEN IN MY MOTHER’S PURSE,” to the guy who took our tickets.)

Renouncing your label would be a fundamental rejection of who you are, like denying that you have blue eyes or long legs.

If I didn’t know you had autism, I might call to you impatiently when you stop to count all the tubs of frosting in the aisle of the grocery store.

“Jack, come on. Let’s go!”

But instead, I will myself to slow down, to stop the cart next to you and help you choose the best, most perfect pink frosting for the heart-shaped Valentine’s Day cake you’ve been talking about baking for weeks and weeks.

Maybe I would wish your baking phase was over, because sometimes it wears on me. But as I become more and more acquainted with autism, I know there will just be another phase lurking right behind it—it could be something innocuous like when you used to rub soap all over the walls, but maybe it will be something dangerous and scary, like when you used to try and run behind cars to see the license plates.

With your label, I have learned to enjoy the hoof beats of horses, because I know there are zebras ahead.

If we didn’t know you had autism, Daddy and I would probably be divorced. The pressure of fitting a square boy into a round world would be way too much for us, and we would crack apart.

Oh, we still argue. You know that. We disagree on whether or not you should wait in line at Disney or order chicken fingers at dinner or apologize for the tantrum you threw at a barbecue. Ultimately, we are trying to figure out how to best soften your edges, so the world may look and feel and taste a little kinder.

But mostly, Daddy and I celebrate.

Without your diagnosis—your label—I’m not sure I would go to such lengths to decorate for every single holiday. But you remind me to go into the basement and bring up the green shamrocks and red, glittery hearts. Your delight is so tangible, your joy so real, that I can’t help but be swept up in the magic.

“Mom. The hearts. They go on the shelf again. And on the table.”

Then there was our trip to Walgreen’s to buy valentines.

“Two. I need to buy two boxes.”

“Why? Why two?”

“There are thirty-two. Thirty-two in each. I have a lot. Of friends now. I need two. For sixty-four cards.”

Standing under the fluorescent lights, in an aisle full of plastic flowers and teddy bears, I thought about how you haven’t been invited to a birthday party or play date in well over five years. In over five years, not a single person has called the house for you, or rang our doorbell, or sent an E-vite.

I could have asked you, “Who, Jack? Who will you send them to?”

Or told you, “No, Jack. I think one package is plenty.”

I didn’t. I simply said, “Definitely. Definitely get two.”

Watching you walk up to the counter clutching two boxes of red cards, I couldn’t help it. My throat tightened and my eyes welled.

Because there is some pain not even a label can abate.

But without it, our family would only appreciate normal. If we didn’t have a name for your unusual characteristics, you may have faded into the background, eventually known only as the difficult brother; the boy who would not play basketball or dance to Michael Jackson or watch The Muppets at night with rest of us.

You would have felt left out, isolated, angry. You would have hated us.

Then maybe the difficult brother would have grown into the troublesome teenager and eventually, the weird uncle no one wants to sit next to at Thanksgiving.

Instead, we see you. Because of a label, we actually see you for who you really are; a funny, quirky, original boy. And every day our family works to bridge the gap between usual and unusual, the neurotypical and otherwise.

“This is my brother, Jack. He has autism. He hears you differently.”

Because of autism’s label, we eat our dinner surrounded by hearts.

You have autism. This is not your fault or my fault or Daddy’s fault. This is not anyone’s fault. It just is.

But you are not limited by your label. You are not pigeon-holed or compartmentalized or reduced. You are loved and embraced, and maybe even the tiniest bit understood.

As for me, I have learned many lessons from the autism label. I have learned how to slow the cart in the grocery store and find the pinkest frosting. I have learned how to compromise with chicken fingers, and that we should always buy our candy at the movie theater.

And one cold afternoon in February, I learned that friendship’s truest measure is not how many times the phone rings or the amount of invitations in your mailbox.

It’s the courage to stand at the kitchen counter, student directory in hand, and write out sixty-four cards for Valentine’s Day.

“For my friends, Mom. I have so many.”

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What Autism Used to Look Like

Dear Christopher,

I’m not sure if you remember me, but we were in the same class in third grade. I was tall for my age, and I had long, blonde hair that I usually wore in messy braids.

You had very dark hair and brown eyes. You were a little chubby, and I remember you wore a white t-shirt and jeans a lot. Sometimes your jeans slid down and your underwear showed.

You talked all the time about the sizes and shapes and colors of different matchbox cars.

Sometimes you got really, really angry and started bellowing and screaming and jumping. One time you threw a chair.

We thought you were a bad boy. We thought you were weird and scary and out of control, and we tried to stay out of your way.

Another time you flew out of your seat with your pencil in your hand and in the blink of an eye, you stabbed a girl in the arm with the tip. Both of you looked stunned. She started to cry, and the teacher brought you out of the classroom. That was the last time I remember seeing you.

Now we have words to describe the way you felt and behaved.

Sensory processing.

Perseverative behavior.

Overstimulated.

Maybe—just maybe—autism spectrum disorder.

See, Christopher, my son has autism. His name is Jack, and he is ten.

Jack doesn’t like a lot of noise. He covers his ears if I am using the blender or vacuuming.

When he gets home from school, he likes to go upstairs and lie in my bathtub with all of his clothes on. He isn’t taking a bath, he’s just lying there. He says it’s quiet for him after a busy day at school.

“Everyone. They talk-ded so much to me.”

He loves music and street maps and baking cakes.

I am learning how to listen to someone who needs to talk a lot about cars and license plates and maps and street signs. I am learning how to make my voice quieter, and my sentences shorter, and to vacuum really, really fast.

Some days he drives me crazy, but most days he makes me smile. Every day, I am learning to live alongside of autism.

And I know. I know the wild look in a small boy’s eyes when everything has all of a sudden become too much.

If I could, I would time-travel my 40-year old mother-self back to third grade and hold you. I would smooth your damp hair back from your face and rock you and whisper quiet body quiet body quiet body until you relaxed. You see, I’ve done this many, many times.

Now I write about autism. I write to try and understand this puzzling phenomenon a little better, so I might unlock the secrets of my son’s mysterious mind a little more.

I write so people can see how incredible and hard and complicated it is.

And people write back to me all the time. They write about their sons and daughters and grandchildren and neighbors.

My daughter was literally diagnosed with autism yesterday.

My 3-year old grandson has autism. I am trying so hard to understand him and to know him.

Some days, it’s as if the world is too much for her.

People write me long, beautiful messages describing the poetic beauty they witness every day.

The sky is simply a different color in his universe.

I love her lens to the world.

It feels like we are a scrambled egg in a fried world.

They tell me how much they ache to connect with the enigmatic person in their lives.

I want to hear my daughter say “I love you,” if only once.

Why can’t I hug my son?

You can absolutely love your child as he is and break your heart over him at the same time.

They write to tell me the many ways in which they celebrate unusual, extraordinary, different.

Your boy says Wednesday is orange? Well mine thinks that Wednesday is purple. And we’re ok with that.

He’s an expert on all the varieties of M&Ms ever invented.

The world needs more people like him.

They help me understand their own condition.

Autism does not have to stop you from doing wonderful things in your life. For that matter, sometimes, autism is a super power. It lets me see sides of life that normal people cannot see.

I’ve had days I love being alternatively wired, and days I wish it would go bother someone else for a change.

My Asperger’s is, has been, and probably will be both a blessing and a challenge, and I’m slowly learning to be grateful for it.

If someone were to ask me if “I could be cured I would,” or if “I could go back and change it I would,” the ultimate answer is no.

I’ve come a very long way, yes. I believe in progress, yes.

And then, Christopher, there is my own divided heart; my commitment to telling our story, while at the same time balancing a young boy’s tender struggle to come to terms with his own diagnosis.

Mom. People will read it. They will know for my autism.

But I am starting to realize that some stories need to be told, or the shame and rage and fear will overflow his heart like a laundry basket full of too many dirty clothes and he will forever feel alone.

The world can feel lonely sometimes, but we’re never alone.

We are not alone.

You are not alone.

He is not alone.

And in spite of the long days and nights without sleep and tantrums in the grocery store, we dearly love this boy.

In spite of the debates over vaccines and pesticides, heredity and genetics, we know he is right where he should be.

I wouldn’t change him.

I would never change her.

He is who he is as God made him, and God doesn’t make mistakes.

This week, one comment in particular really caught my eye. It was an e-mail from a teacher, and it made me think of you, Christopher.

Every child needs a champion.

Because of you, Jack has many champions.

He has something called a paraprofessional; the kindest, gentlest young man who helps him navigate his fifth-grade day.

I can tell when things are getting to be too much for him, and so we take a walk.

He has a soft-spoken teacher who researches special little projects that might appeal to Jack’ interest in baking and help him master fractions at the same time.

I found a cake recipe, where he could use math to double the amounts. I think this would really help him understand the concept better.

He has a speech therapist and sensory breaks and something called an Individualized Education Plan.

All of these things help Jack talk and listen and learn. And when he’s had enough, he can listen to music in the bathtub.

Because of you, people who are unusual and quirky and extraordinary have better days. Tolerance has replaced judgment, and we are beginning to understand that there is more than one way to make an egg.

Autism is not a condition to be mastered. There are no experts. But together, we are getting closer and closer to understanding this tricky thing called spectrum disorder. We are moving towards a sky that is bursting with many brilliant colors.

Thank you, Christopher. Because there were kids like you, now there can be kids like Jack.

I don’t know where you are now—whether you are married or single or have a family or live alone—but I hope you found a place in this world that’s a little kinder.

I hope you found a champion.

Best,

Carrie

Jack and his para, Mr. M.

Jack and his para, Mr. M.

 

Diagnosis: Autism

The first chapter of the book I wrote is a letter to myself the day Jack was diagnosed with autism spectrum disorder. It’s everything I wish I knew about him and me and autism way back in November of 2006, when he was a chubby 18-month old who made me frantic because he wouldn’t talk or point or play or sleep.

I’d like to share a part of that letter with you today.

But before I share the letter, I have to give you the back story. I have to tell you about the day he was diagnosed; a memory that is so intact, so perfect and whole and tender, it’s as though it happened last week instead of nine years ago.

For months, we’d been on the wait list for an appointment with one of Buffalo’s top developmental pediatricians. My husband Joe and I were shocked at how long it took to get into some of these places, and stupidly, we believed that by the time we actually did see a specialist, Jack would have outgrown all this stuff and be totally fine.

It didn’t exactly happen that way.

One chilly afternoon in the late fall, the doctor’s office called to say they could squeeze us in at the end of the day. I made arrangements for a neighbor to watch 2-year old Joey, and called Joe, who was busy with patients and unable to get away.

I buckled Jack into his car seat and raced downtown. After about forty-five minutes of chasing him around the crowded waiting area, they announced our name, and we trooped back to a tiny, cramped exam room.

I mean, it was small. I’m fairly tall—about five foot, nine inches, and I have really big feet—and I felt like a giraffe sitting in one of the chairs positioned by the wall.

I was hot, and the waistband of my pants felt snug. I picked at the button irritably while Jack slumped against my leg. Ten minutes later, the doctor came with a chart in his hands. He had soft brown hair that sort of flopped over his forehead. He had on a white shirt with a tie.

He looked over the paperwork I’d sent—months and months worth of evaluations and tests and assessments that had scary words and phrases like auditory processing disorder and significant speech delay—and  started to ask me some questions quietly. He talked to me, but he kept his eyes on Jack, who was listlessly tracing the outline of a tile on the floor.

How much speech does he have now?

Well, he’s still not saying any words. He signs for more, and sometimes he kind of says up. But it sounds like uuh-uuuh.

How about Mama or Dada?

No.

Does he point?

No.

Does he turn when you call his name?

No.

Does he play any games like Peek-a-boo or Patty-cake?

No.

Any other concerns?

He doesn’t sleep well. He seems to have a hard time kind of managing certain foods, like he has trouble swallowing or something.

I see. Anything else?

Well, he never, um, looks at us. Or reaches for us. It’s hard to describe, but it’s like we don’t exist to him. He doesn’t seem to know who we are.

All at once, Jack got up from the floor and began to whirl around. He kept his head down but his arms were extended, like some kind of animated starfish. He stumbled and bumped his shin on the filing cabinet, and he started to shriek.

I called out to him. Jack, come to Mommy. Jack, are you okay?  But he didn’t move or look my way.

I got up and walked the three steps to where he stood, flapping and screaming. I tried to mold his body into mine and curl him against me, but he kept his limbs and torso as stiff as a board. The doctor watched, motionless, from his chair.

Does he ever come to you for comfort? If he’s hurt?

I shook my head. No.

I looked back at the kind man sitting in the room with us, and time stood still.

And in that space of maybe a fraction of a second, I think I knew. I knew it was no longer about eye contact and how many words he could say and whether or not he pointed his finger to show me a bird in the sky.

It was about a solitary little boy who was so remote and inaccessible and lost to me that he didn’t need my comfort when he was hurt.

He didn’t need me to kiss the boo-boo, or wipe away his tears, or murmur sssshhhh it’s alright Jack, you’re okay into his small ear while I cradled his head against my shoulder.

I wish I could describe the way I felt in that second. Crouched over Jack, I felt a pain so white-hot, it was almost searing.

I longed for Joe.

I longed to nestle my face into his neck.

Because although I am tall, Joe is taller, and his neck is the perfect place for me to grieve whatever it is I need to grieve: a miscarriage, a bad day at work, a little boy who will not say one blessed word.

But it was just me. Just me and my son.

I walked out of the doctor’s office and through the waiting room and back into the world, holding my sweet, silent, mysterious Jack’s hand.

And on that day, this is what I wished I’d known. For both of our sakes.

November 3, 2006

Dear Self,WCMNewCover

Today you received Jack’s official diagnosis. You expected this news along, but even so, you’re still reeling from the doctor’s softly-spoken words. You listened attentively to his hushed voice saying things like considerable delay and early intervention as Jack whirled and spun around the tiny exam room. At one point you started to sweat.

It’s been a long journey leading up to this day, a long road of when will he talk and why doesn’t he recognize me. A long two years of tantrums, heartache, and the eerie quiet of a toddler who doesn’t speak. Months of watching your brown-haired boy through a two-way mirror as a variety of specialists tested his hearing, tested his language, tested the very way he stacked multi-colored blocks.

Autism.

Right now, you’re thinking you can fix him, that he will outgrow this. But you can’t and he won’t.  Instead, both you and he will learn to coexist with it, and in the process you’ll discover how grateful you are to be privy to the miracle of his mind.

Slowly, steadily, you’re going to see Jack for everything he is rather than what he is not. The list of he’s not talking when will he point why doesn’t he play with others will eventually be replaced with look at his smile I love to hear his voice tell me again Jack tell me everything you have to say tell me.

He will surprise you every single day.

In the meantime, I won’t lie. You have some very long days ahead of you, days full of frustration, of intense outbursts, of whining. Days where you’ll go to bed at night hating yourself because you feel you haven’t done enough or haven’t done it right. But you will always wake in the morning with renewed resolve and determination because deep down you know he needs your strength.

At times you are going to marvel at his progress, his giant leaps in communication and social behavior. Then for a while, nothing. His development will level off and you’ll fight a rising panic that he’ll never move forward again.  Don’t worry, like the steps on a staircase, his pattern will be to jump up and then stand still for a while.

He will teach you to see days as colors.

Jack’s going to latch onto subjects, things like cars and license plates and seemingly random dates. As you continue to open your own mind to autism, you’ll start to understand what it all means to him.  And so it will be meaningful to you.

You’re also worried about how Jack’s autism will affect the dynamic with his siblings. Please trust me that the relationship between these children is going to blossom into something extraordinary. You are all going to change for the better because of him.

And although you’ll start to understand that you can’t save Jack, you will never, ever give up on this incredible boy.  One day there will be a beautiful moment when the boy and the autism combine and you fiercely love them both.

I can’t wait for you to meet him.

Oh, and one more thing.  If you think today was crazy, you might want to brace yourself. Because tomorrow you’re going to find out you’re pregnant.

~Me

P.S. It’s a girl.

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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.

 

 Check out both of Carrie’s books, available on Amazon and in bookstores.CoverSomeoneI'mwithCover