Editor’s [Carrie’s] note: I wrote this post after talking with Jack about what holiday parties are like for him. He read it over, and reminded me the cookies were shaped like snowmen. I thought they were reindeer.

My mom told me we are going to your house on Saturday. For a holiday party.

The last time I was at your house was December 18, 2010. I remember you had cookies shaped like snowmen with chocolate chips for the eyes. I ate three of them.

I was five years old. I had autism.

Now I am twelve. I still have autism.

Last week my mom took me to see a doctor. It takes us usually forty-two minutes to drive there and we always stop for lunch at the same restaurant on the way home. It’s called the Common Place Café and it is really small and has wooden tables that are shiny. I order the cheeseburger and it is very good.

I like this doctor a lot. She is called a Developmental Pediatrician and the first time we went to see her was April 14^th, 2011. It was a Thursday. I was in first grade and I was having lots and lots of fears about the weather and food that was orange and going to sleep at night in my bed.

She said I had something called anxiety. I call it my fear.

This time the doctor and my mom talked a lot in the small office. Their voices were quiet almost like whispers but not exactly.

New medicine.

Fine, good.

Depression?

Better he’s sleeping more almost all night.

After one hour and four minutes, the doctor closed her folder and said to my mother, “Remember, this time of year is hard for kids like Jack. The holidays feel very chaotic to him. People will think you are controlling and rigid, but try to keep him on his schedule.”

I like my schedule. It makes me feel safe and cozy and warm like I am wearing a big, soft blanket.

I like to go to bed at 8:30. 

I like to wake up at 6:00.

Then I take my bath. This takes me nineteen minutes and afterwards I put on my clothes and eat my waffles.

I like parties. I like to try the cookies and look inside people’s houses and especially to open presents.

But at the very same exact time, parties are scary-hard-unusual-different-every-time for me.

Firstly, I don’t like to wear itchy clothes like red sweaters or khaki pants with buttons. With the pants I always have a fear that I won’t get them to be unbuttoned in time for the bathroom. That would be for me embarrassing.

And people like to hug every minute. I do not like to hug people all the way. I don’t mind a hug with one of my arms but both arms is too much closeness and touching for me.

Then there is the loudness, with everyone talking all together and laughing big laughs and putting clanging pans into the oven. It echoes in my ears and repeats over and over in my brain. I have to sift through the sounds the way a small boy or girl sifts through the sand on the beach to find the prettiest seashells.

Sometimes, even though I don’t want to, I get very, very mad.

My mom says it’s kind of like an orchestra. The tag on my shirt scratches my neck a little bit, and then a man standing too close to me is eating a cracker piled high up with crab dip and it smells very strongly in my nose. The flutes begin to softly hum their notes, and I start to bite my cuticles.

I rub my fingers down my nose.

I jump.

The clarinets join the flutes. The saxophones begin their music, and the trumpets make their trumpet-y sounds.

I jump higher.

I spin in circles.

I pull at the hair right above my ear.

These are the signs that my madness is coming.

My mom does not relax at parties. Sure, she may look calm and happy, talking and laughing with her plate that has a lot of shrimp on it.

She just loves shrimp and she always eats it with red spicy sauce.

But do not be fooled by her. While she is talking and laughing and dipping her shrimp into the sauce, she is watching and looking all the time. She stands alert, like a soldier on the edge of a battlefield.

She is watching to see if I snuck out the front door quiet-like to look at the Jeep Cherokee parked in the driveway.

She is keeping an eye on the staircase to make sure I don’t wander upstairs and go through the medicine cabinets.

She is checking the buffet table so she can catch me before I use my finger to poke holes in all the soft, squishy dinner rolls that are piled in a basket.

At the very exact same time she’s watching, she’s listening.

She’s listening for the steady rhythm of the flutes, the hum of the saxophones, and the loud, brassy trumpets.

She knows, you see. She knows if we get to the drums we are too late for catching the madness. Once the cymbals make their big loud shiny crash it is too late for me I am there I am screaming I am mad I am alone I am alone I am done.

The room is too hot and my clothes are too itchy and the food smells like it is all mixed together and people are staring at me and I don’t know what to do.

It’s not what I want. I hope you know that. I don’t want to get mad. I don’t want to ruin your party. When this happens there is a place deep inside me—a place no one else can see or know or touch—where I feel embarrassed and ashamed. A small dark awful small place where I hate myself.

I am all the time trying.

I say this a lot. I say it when my mother tells me I have to keep my body calm or she asks me to wear the soft shirt with the red and white stripes she bought specially at the store that she says is festive.

I am all the time trying.

People like to tell my mother and father things that on the outside sound like nice frosting-on-a-cake ideas. But when you listen hard, they don’t sound like sweetness and sugar. They sound like sour judgement.

How about gluten-free?

You know, I hear of great treatments for kids like him out somewhere out in Colorado.

Come on, just relax! It’s the holidays, let him touch the rolls if he wants.

The thing is, my mom and dad, they know all about the gluten-free and the treatments in Colorado.

And when it comes to autism, they know there is no holiday. There is no Christmas-Hanukah-carve-a-turkey-relax-day. It is 356 days a year of progress and hope, disappointment and fear.

This Saturday I promise I will do my best to not get mad.

It helps if I have a quiet place to go when the music in my head is too loud. It doesn’t have to be anywhere fancy—a small bedroom that no one ever uses, or even a room where you keep all of your sewing stuff is good too.

And if you are nice and you give me a present, try not to get too sad or maybe a little mad if I don’t seem so excited. I love presents. I really do. On the inside I am jumping up and down and my heart is skipping like it has a jump rope. But it’s hard for me to get my outsides to match my insides.

Follow my mother. Watch carefully as she puts sets her plate and walks to me and takes my both of hands in hers. Listen to her words.

Shhhh, Jack. It’s okay. Let’s calm down, I’m here now.

Watch my father as he puts his strong hands on my shoulders and turns me around until I am facing him.

Come on, buddy, let’s take a walk.

See, my mother and my father know what’s best for me. They know autism is little more than a delicate ballet, full of forward movement and backward retreat. They know how hard I am trying to march to everyone else’s tune, even when it’s easier to dance to my own beat.

Don’t do the judgement.

I think what I would like the very most at the party this Saturday is for you to talk to me. Try to get to know me. I am interesting. I am funny. I am smart. I love Disney and I bake cakes a lot and this year I wrote a letter to Santa and asked him for a selfie stick.

I am here.

I am waiting.

I am all the time trying.

From,

Jack

 

 

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From Rosina:  I have learned through experience that most times it is best to let others tell their stories; and I tell my own. But this post on Carrie Cariello’s blog touched me so deeply that I asked her if I could republish it here, and she kindly consented. If someone you love has autism or another behavioral/mental health issue, be sure to check out her blog. Warning: you might need to grab a box of tissues before you start reading. Carrie Cariello’s writing is exquisite and piercingly honest.

In some ways my son is very different from Jack, but there are also striking similarities. (And I am a mother who is always watching.) Please, if you know children like this, do not judge. They are trying so much harder than you might think. All the time trying.