All the Time Trying
Editor’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 14th, 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.
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 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-Hanukkah-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 sets her plate down 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
December 5, 2016 @ 10:35 am
Every Monday, I look forward to your posts every Monday! I learn so much, so I can help my grandson. Thank you!!!
December 5, 2016 @ 10:51 am
Thank you Carrie! Wishing you and your family all the very best this holiday season. Side hug to Jack!
December 5, 2016 @ 11:15 am
I hear you Jack. I know you are all the time trying so hard. Xx
December 5, 2016 @ 11:44 am
Jack, I hope this Christmas is your best ever.
December 5, 2016 @ 12:58 pm
Jack, we love you just the way you are. And we don’t even know you!
December 5, 2016 @ 4:40 pm
Boy, have we been there. Wishing your family many successes this holiday season.
December 5, 2016 @ 4:42 pm
I wish everyone could read this blog. We could all use reminders to think about things from others’ perspectives, rather than just passing judgement. Thanks for helping us see the other side, in such an eloquent and thoughtful way.
December 5, 2016 @ 11:53 pm
I LOVE THIS. I AM SIXTY-FOUR. I’M NOT “AUTISTIC”, BUT I WAS VERY SAD ONCE FOR A WHILE, AND WHAT I DID ALOT OF THE TIME (FOR AWHILE) WAS BE ANXIOUS. I WAS SHY AS A GIRL, IN BRAIDS. I WAS NOT AN UNHAPPY CHILD. I LOVED HEIDI. I LOVE WHAT JACK WRITES. I WAS CONSIDERED “BI-POLAR” BY SOME DOCTORS FOR AWHILE, THEY GAVE ME PILLS. MY FAMILY THOUGHT MY CHEMICALS IN MY BRAIN WERE A LITTLE MESSED UP. But the chemicals they gave me made me feel worse. Like I was nothing. That was many years ago. I am an artist. And teacher. When i was little, many times over I did not understand the world. wars and things, you know. I would climb up into my tree-house and wonder why. I love music and want to be a singer; I sing in about seven languages. Now I learned I am not crazy. I just went through about 3 Spiritual Emergencies in my life. Once, after my dad died. Many times i have felt like jack. many times. And many times I was(am) very very joyful. I read about Jacob Barnett. They told his mother she could be happy if he ever was able to tie his shoes. His mother believed in him. The last I heard was that he was giving talks. On Autism. And on Quantum Physics, at Universities. My self, my own mind was making my own mind scared. Now I am not scared any more. Now I dance. Now I don’t take any medications. I have a wonderful job. The whole world is multipolar. Yesterday I heard on public radio a great story. About a boy, also. His mother started a group called Autism Sees. Thanks for this article, Carrie and Jack.
December 6, 2016 @ 4:11 am
excellent post! I grew up and things got a lot easier for me over time but crowds are still hard, and holidays (even though I love them) still make me anxious. it’s brave of you to keep going and working so hard. I know it isn’t easy.
December 6, 2016 @ 8:49 am
Oh how I love to read these posts! Thank you Carrie and Jack. My daughter, who is on the spectrum, is in her senior year of high school. She just finished her 4th year of marching band! I don’t think I would have ever imagined her playing an instrument AND marching in a competitive marching show. And yet, I didn’t ever doubt that she couldn’t do it. She is all the time trying. ALWAYS. And as you know, as a mother of a child with autism, we are all the time trying too. I’m amazed that I get to see the world from two different points of view. The neurotypical, suppressed input view and the extra sensory, crazy chaotic scene that is everyday life. It’s a wonder we don’t all pull our hair and pick at our cuticles. (She has these indicators when she’s under stress as well.) She teaches me everyday to find a little quiet amidst the chaos. Enjoy the holidays; the loud music, bright lights, mixes of flavors, lots of people, as well as quiet time with family, the cozy blanket of short winter days and familiar traditions!
December 7, 2016 @ 8:01 pm
My Grandson Nick is 12. He is a little person with autism. I think he would like you.
December 13, 2016 @ 1:48 pm
This makes me weep. It’s the story of my son. And of me, the mother who is always watching.
Would I be allowed to post this on my little blog? (With proper credits, of course.) I want people to understand my son and others with the same tendencies.
December 13, 2016 @ 2:45 pm
I would be honored if you shared it, Rosina. Thank you!
December 13, 2016 @ 2:56 pm
Thank you so much! ❤
December 25, 2016 @ 4:21 pm
If that’s one of Jack’s new self-portraits, wow! Tell him, “You have a great composition skill. I really like how the beams of like create diagonals that work with the tilt of your head.”