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Dear world: This is what autism really feels like to me.

These are the things people don't tell you about living with autism.

The author, Jack’s mother, wrote this from Jack’s perspective based on conversations and observations of him at the Disney parks and in life.

Dear world,

Last week, my family went to Disney.


My mom and dad picked us all up from school at 12:14 on a Tuesday afternoon. I was in science and I was very surprised when I heard my name on the loudspeaker.

When I got in the car, they told my three brothers and my sister and me that we were going for a flu shot. We were all very mad about that.

Then my parents pulled the car over and said, "Why don’t we go to Disney instead?"

I didn’t know what to think about it. I was happy, but I also like to know about things a long time before they happen so I can think and talk and plan for them.

But this time my mom was all sneaky about it because she hates when I know about trips. I always want to pack my own suitcase full of the things that make me feel calm inside, like my special bunny and my Chapsticks.

Jack and his mom. Photo provided by Carrie Cariello, used with permission.

One time, we argued for two hours because I tried to pack my humidifier for our skiing trip. I kept showing her how it would fit into the suitcase fine as long as it didn’t have any water in it but after a while she shouted, "We are not taking that humidifier, Jack! Stop driving me so crazy!"

We got to Disney around 6:00 at night, and the first thing I did as soon as we got to our hotel was unwrap the soap in the bathroom.

I do this every time we go to a hotel. While everyone else is bouncing on the beds and wheeling the suitcases around, I go quietly into each bathroom and find the soap.

We had dinner in a crowded restaurant. I could tell everyone around me was happy-happy-happy, but I could not stop worrying about school. I was worried about missing something fun like a movie during class, and I kept asking my mother over and over to e-mail my teacher.

There was a man sitting right behind me and he was laughing so hard and weird it sounded like a donkey who had just heard the funniest joke ever.

Then my father ordered something pink and spiny called crab legs, and I could smell their fishy smell and it bothered me.

And there was a woman at the table next to us who was wearing a string of Christmas lights around her neck, and they were blinking on and off and on and off over and over again.

All of a sudden my brain could barely breathe.

It was already 9:23 p.m., and I really like to be in bed by 8:30 p.m., and because of this laughing and the blinking and the smelling I felt like my skin was trying to come off of my face.

I tried doing my newest trick, which is making my fingers dance and twitch in front of me. It makes me feel good, but I can tell it does not make my mom feel good because she leaned over and asked me to stop. She said we should have brought my stress ball, and if I had known about the trip, I would have reminded her a lot of times to pack it.

So I tried to keep my hands very still but I felt like a balloon that was going to pop. I had to do something, so I shouted, "What the f*&%!"

I know these words are bad, but sometimes they feel so good to say. They feel hot and salty on my tongue, and when I shout them, it’s like letting a little bit of air out of the balloon.

Words are very weird for me. If they sound even a little bit different, I have to double-check in my brain before I recognize them.

Like the way my bus driver likes to say, "This is the route home," and she says it like the root on a tree. When I hear her say this, I think of tall, straight trees with soft leaves.

Then one day we had a substitute bus driver and he said, "We’re going to take the same route home," except he didn’t say it like the tree root, he said it like "rowt," so then I had to do my double-checking and figure out what he meant.

In Disney, we went to visit places called parks every day, except they look nothing like regular parks that have slides and stuff.

These places are huge and crowded, and they have music and food and people called characters wandering around in their big silly costumes.

Jack and his family at Disney. Photo provided by Carrie Cariello, used with permission.

The minute we stepped into the park, everyone — especially my brothers and sister — started to be so bossy about me. It was making me really mad.

"Jack! Over here!"

"Where’s Jack?"

"Jack, stay with us!"

Finally I screamed, "Everyone stop BOSSING me!"

Mom took me aside and told me our family just wants to make sure I am safe and that I don’t wander off, but it still didn’t feel very good. I am 11, not a baby.

The ride called Space Mountain was so fun.

My dad took me and my brother Charlie back to the park until late one night, and we rode it all together, and it made me so happy. I could not stop talking about it.

Sometimes I can’t stop thinking or talking about things.

Like that night at dinner, I kept asking and talking about the death penalty because I saw something about it on the television at the airport. Whatever I am thinking about gets big and huge in my mind, and it pushes everything else to the side, like an elephant in a crowded elevator.

My mom got a little mad and said, "Jack! We are in Disney! Please stop talking about the death penalty."

The next day, we went to a place called Epcot, which was totally boring and not as fun as the park called the Magic Kingdom because it was all about learning.

We were in line to go on a ride inside of this big ball that looks just like one of the golf balls my dad keeps in the garage but tells us not to fool with, and I turned to my mom and asked when it was going to snow at home.

The lady in line behind us heard me, and she said, "Oh, you said it! You said that nasty word, snow!"

Jack and his family. Photo provided by Carrie Cariello, used with permission.

I had to do my double-checking because I didn’t think "snow" was was a nasty word. Snow is nice. It is cold and pretty and sometimes we don’t have to go to school if we get a lot of it.

"Snow is not NASTY. You are freaking WRONG."

When I said this to her, the smile disappeared from her face like someone had wiped it away with a sponge. My mom put her arms around my shoulders and turned me away, and then she turned back to the lady and said a few things quietly. I think she was telling them about my autism.

I used to hate when she did this because it made me feel bad.

But my mom tells me a lot that autism is not a secret — it is not something to feel embarrassed or ashamed of because it is as much a part of me as the freckle on my left leg.

World, all day long you flash and dance around me being your funny, stinky, noisy, happy, scary self. You confuse me.

See, I am like a fish inside an aquarium. I want to watch you from behind the glass. I want to stay in my school and eat my regular food and listen to my favorite radio station and go to bed at my normal time. I do not like surprise trips.

I am safe here, in my bubble. Your sounds are muted and hushed, and I can tell the difference between a nasty word and a nice word. I don’t have to listen to your big loud donkey laughs or shut my eyes against your blinking lights.

At Disney, we took something called a shuttle a lot.

My dad was always shouting, "Come on! We’re going to miss the shuttle!" and then when we got to the pick-up place it would have just left like a second ago so we’d stand around and wait another 20 minutes.

One night we were riding the shuttle very late. It was very dark inside, and I was sitting next to my mom and thinking about snow and nice words and nasty words, and then I remembered another word I didn’t know.

"Mom. What does for loner mean?"

"Well, it means, like, to be alone. A person who is alone. Why are you asking? Do you think you’re a loner?"

"Without you. For yes."

"Oh, Jack."

I could not see her face, but I could feel her wearing her sadness on her body like an itchy sweater, the kind she makes us wear for our Christmas picture. I put my head on her shoulder, and then she put her head on my head, and we stayed that way until the shuttle stopped, even though I don’t usually like to touch people for that long.

On our second-to-last day, we had lunch in an African restaurant called Sanaa, where we could look out the window while we ate and watch giraffes and ostriches strolling around.

Our server was a nice smiley man named Boylson. His name tag said he came from Botswana, which is in Africa, and he didn’t get mad when I shouted, "This food makes no SENSE TO ME."

After we were done eating this funny bread called naan and my brothers and sister wandered away from the table to look at the animals, I heard my mother ask Boylson if they had autism in Botswana.

She is not shy, my mom.

Photo via iStock.

"Oh, yes," he smiled at her. It was not a real smile that made his face look happy, but more like he stretched the corners of his mouth. "It is everywhere."

Then she asked about services and evaluations and doctors, and he just looked at her and smiled once more, gentle-like this time.

"You know, there was a boy in our village who could not hear a single sound. Nothing at all. But still, we found a way to talk to him. We loved him."

I was thinking hard about a boy who could not hear a single sound because I think that would be weird and also maybe kind of nice not to have to hear loud donkey laughs, but when I looked at my mother I could tell she wasn’t thinking about that boy at all. I could tell she was thinking about me.

My mom was thinking about always trying to find new ways to talk to me and to hear me and to love me — to nudge me out of my fish tank and into the wide, open world.

She knows I don’t want to be a loner.

I think I know the answer, world.

You and I, we can’t be something or someone we’re not. We can’t change all the way for each other. But this does not mean we won’t be friends.

So I think you should keep being your stinky, funny, loud, busy self. Tell your jokes and laugh your laughs and smell your smells.

I will continue to be myself. I will do my double-checking and try to understand your words and shrink the elephant in my brain so he’s smaller, more like a turtle.

In the meantime, if you happen to notice a boy standing in the airport and his fingers are dancing in front of his eyes, be kind.

Be tender.

I am trying.

From,

Jack

Images courtesy of Letters of Love
True

When Grace Berbig was 7 years old, her mom was diagnosed with leukemia, a cancer of the body’s blood-forming tissues. Being so young, Grace didn’t know what cancer was or why her mother was suddenly living in the hospital. But she did know this: that while her mom was in the hospital, she would always be assured that her family was thinking of her, supporting her and loving her every step of her journey.

Nearly every day, Grace and her two younger sisters would hand-make cards and fill them with drawings and messages of love, which their mother would hang all over the walls of her hospital room. These cherished letters brought immeasurable peace and joy to their mom during her sickness. Sadly, when Grace was just 10 years old, her mother lost her battle with cancer.“

Image courtesy of Letters of Love

Losing my mom put the world in a completely different perspective for me,” Grace says. “I realized that you never know when someone could leave you, so you have to love the people you love with your whole heart, every day.”

Grace’s father was instrumental in helping in the healing process of his daughters. “I distinctly remember my dad constantly reminding my two little sisters, Bella and Sophie, and I that happiness is a choice, and it was now our job to turn this heartbreaking event in our life into something positive.”

When she got to high school, Grace became involved in the Leukemia & Lymphoma Society and a handful of other organizations. But she never felt like she was doing enough.

“I wanted to create an opportunity for people to help beyond donating money, and one that anyone could be a part of, no matter their financial status.”

In October 2018, Grace started Letters of Love, a club at her high school in Long Lake, Minnesota, to emotionally support children battling cancer and other serious illnesses through letter-writing and craft-making.


Image courtesy of Letters of Love

Much to her surprise, more than 100 students showed up for the first club meeting. From then on, Letters of Love grew so fast that during her senior year in high school, Grace had to start a GoFundMe to help cover the cost of card-making materials.

Speaking about her nonprofit today, Grace says, “I can’t find enough words to explain how blessed I feel to have this organization. Beyond the amount of kids and families we are able to support, it allows me to feel so much closer and more connected to my mom.”

Since its inception, Letters of Love has grown to more than 25 clubs with more than 1,000 members providing emotional support to more than 60,000 patients in children’s hospitals around the world. And in the process it has become a full-time job for Grace.

“I do everything from training volunteers and club ambassadors, paying bills, designing merchandise, preparing financial predictions and overviews, applying for grants, to going through each and every card ensuring they are appropriate to send out to hospitals.”

Image courtesy of Letters of Love

In addition to running Letters of Love, Grace and her small team must also contend with the emotions inherent in their line of work.

“There have been many, many tears cried,” she says. “Working to support children who are battling cancer and other serious and sometimes chronic illnesses can absolutely be extremely difficult mentally. I feel so blessed to be an organization that focuses solely on bringing joy to these children, though. We do everything we can to simply put a smile on their face, and ensure they know that they are so loved, so strong, and so supported by people all around the world.”

Image courtesy of Letters of Love

Letters of Love has been particularly instrumental in offering emotional support to children who have been unable to see friends and family due to COVID-19. A video campaign in the summer of 2021 even saw members of the NFL’s Minnesota Vikings and the NHL’s Minnesota Wild offer short videos of hope and encouragement to affected children.

Grace is currently taking a gap year before she starts college so she can focus on growing Letters of Love as well as to work on various related projects, including the publication of a children’s book.

“The goal of the book is to teach children the immense impact that small acts of kindness can have, how to treat their peers who may be diagnosed with disabilities or illness, and how they are never too young to change the world,” she says.

Since she was 10, Grace has kept memories of her mother close to her, as a source of love and inspiration in her life and in the work she does with Letters of Love.

Image courtesy of Grace Berbig

“When I lost my mom, I felt like a section of my heart went with her, so ever since, I have been filling that piece with love and compassion towards others. Her smile and joy were infectious, and I try to mirror that in myself and touch people’s hearts as she did.”

For more information visit Letters of Love.

Please donate to Grace’s GoFundMe and help Letters of Love to expand, publish a children’s book and continue to reach more children in hospitals around the world.

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