When a Dad Approached Us After My Son With Autism Hurt His Child

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The last two years since my younger son, now 6 years old, was diagnosed with autism, have brought lots of ups and downs and challenged our family’s way of life. For me, it was permeated with feeling isolated and misunderstood in most of my social experiences. I’m sure this is partly due to closing myself off to perceiving things differently, not through the painful lens of grief. But once in a while, that door would open, and people around me would humble and inspire me with their incredible wisdom and kindness.

This year, I feel indebted to a parent my son and I met at a local playground under not-so-happy circumstances, when my son unexpectedly lunged and toppled to the ground a girl much smaller than him who was drawing with chalk on the sidewalk. The girl’s father scooped up his daughter and looked at me as if asking a question. He said nothing; he didn’t yell at me or my son (which happened to us once before in a grocery store). He just waited for an explanation.

I apologized profusely and explained that my son has autism and that this behavior is new to us, and I was not able to predict and prevent it. Luckily, the little girl didn’t get hurt physically, but she was pretty upset. I helped my son apologize to her, and we quickly retreated to our car, where I just started crying. We couldn’t leave immediately because we had to wait for my other son who played tennis in the nearby courts.

The father and his daughter approached us. He inquired if I was all right and asked for help to explain the incident to his daughter. He said it was important to him that she didn’t think my son was a bad person. It was important to him that she feel comfortable around children with special needs. So we talked to her about how my son needs help talking to other children, how he loves drawing with chalk and probably wanted to join her but didn’t know how to ask. She happily went on to ride her bicycle, and we went home.

I don’t know how to convey the sense of responsibility, shame, sadness, anxiety, guilt and horror I feel as a parent when my child hurts another person. These feelings can flood me all at once, making it difficult to function well in the moment. It took me a couple hours to realize the extraordinary thing that happened when this awesome dad of the girl my son hurt approached us. I want him to know he made a difference in my life. I also wonder somewhat anxiously whether he recalls this event as positively as I do. I hope he does.

I’m so grateful to this individual — who was and is a complete stranger to us — for his kindness and understanding, and for his ability to actively express it. It gives me hope when I read stories about lawsuits by neighbors and families being taken off flights due to concerns about their family member with autism. I wonder sometimes if I’d be able to respond this way if I were in his shoes, and I make a renewed commitment to try not to judge, and to practice kindness and acceptance.

Egle Narevic's sons
Practicing gentle touch with older brother’s guidance.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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This Is What I Imagine Autism Feels Like for My Son

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Editor’s note: This is written by a mother from the perspective of her son.

Dear World,

Last week my family went to Disney. We went to the one in Florida, not California. The one in California is called Disneyland and it opened on July 17, 1955. Disney World opened in 1971.

Anyway, my mom and dad picked us all up from school at 12:14 on Tuesday afternoon. I was in science, and I was 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 they 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.

We got to Disney around 6 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 email 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 their fishy smell 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 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 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.

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.

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’m safe and that I don’t wander off, but it still didn’t feel 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 on 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 he 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!”

I had to double-check 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. One night we were riding the shuttle 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 a 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 nametag 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.

“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.

She 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.

And 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

Follow this journey on Carriecariello.com.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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My Experience With Relationships as an Adult on the Autism Spectrum

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Oh, relationships. At the age of 27, I’ve had several relationships throughout my life. I’ve also had several breakups. When I talk to families with children on the spectrum, this is usually one of the big subjects but also one of the most sensitive. How does a person on the spectrum even go about having a relationship? I believe it’s a difficult road with no clear answer.

I remember one of my first relationships that dealt with many of these issues. She was one of the most beautiful women I met at college. I constantly misjudged her sarcasm to the point that I never knew whether or not she was being serious with me. Although she understood the spectrum as a special education major and knew many people with autism, I often felt out of place with her, which ended with us breaking things off.

Along with sarcasm, some of my main problems in relationships have been due to “social awkwardness.” This social awkwardness could be attributed to many factors, but for me it was always based on “small talk” and “mind blindness.” 

Many times (especially when I was younger), I couldn’t hold a conversation, making small talk or any type of interaction awkward because of the silence and long pauses involved.

The only way I could keep a conversation going was to change the subject randomly to something that was of interest to me, such as basketball. This was hard because while I did have friends who play and like basketball, it’s not something you want to hear about 24/7. How do you make strides without having the capabilities of conversation?

Confidence also became an underlying issue because of these tendencies. Moments when I didn’t have anything to say made people think I was a shy person who wanted to be left alone, which was never the case. Could you imagine a scenario where you want to be talked to, in many cases even loved, but you just don’t know how to acknowledge it?

Mind blindness, which is typically known as the inability to develop an awareness of what another person is thinking, made for some difficult scenarios for me. The inability to “put myself in the shoes of another” limited my understanding of others and made it difficult to develop anything but basic friendships/relationships. People in today’s society are complex, and reading them — not only from a relationship standpoint but to advance in life, whether its through school, employment, etc. — is a necessary skill.

At 9, my doctor recommended against mainstreaming me in a public school, because she said I would never understand social cues and was worried about me getting beat up. I survived those days, thanks to coping mechanisms, splinter skills and/or growing up. But looking back, I wish I found someone who understood what it was like. Whether it was an intimate relationship or just a friendship, I wish I found someone on the spectrum who knew exactly what I was going through. It’s not the same case with other people, where maybe you can relate with someone because you both have the same background, for example.

Being on the spectrum, no one case is the same. Every case is different, which means you might always find something close but not exactly what you’re looking for. Plus, some students on the spectrum might not go to college. How do you approach it when you’re the minority dealing with a majority who may or may not be accepting of who you are?

My standpoint on relationships is pretty simple. Whether you’re on the spectrum or not, all relationships are hard work. Whether you’re in a relationship or not, the best thing you can do for yourself is be who you are and negate all the negative energy that may come your way.

A version of this post originally appeared on Kerrymagro.com.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Why We Sing ‘Happy Birthday’ With My Autistic Son Every Thanksgiving

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Thanksgiving is almost upon us, and with it comes the yearly conundrum faced by this autism family and our extended family.

Whom should we sing “Happy Birthday” to on Thanksgiving Day? The turkey? The pilgrims and Native Americans? We’ve regaled them all over the years.

I think a little explanation is in order.

boy in blue shirt holding lollipop

My autistic son, now 13, loves to sing “Happy Birthday” at every family gathering. In his worldview, it’s not a party until we sing “Happy Birthday.” And our big extended family always sings along.

Sometimes the holiday/Happy Birthday mash-up is effortless. On Easter, we sing “Happy Birthday” to the Easter Bunny. On the Fourth of July, we sing to Uncle Sam or America. In a few weeks, our Christmas carol will be “Happy Birthday Jesus.”

But Thanksgiving is always a bit of a stumper. (Let’s face it, “Happy Birthday Turkey” is just wrong on too many levels.)

Really, though, the conundrum is not a big deal. The way our family welcomes our son’s contribution to family gatherings is.

They all appreciate the dazzling joy on his face when we sing his favorite song. They understand he needs to spend much of the gathering outside with his dog or in a quiet room with my husband or me until his big moment. It’s really no big deal to them.

It is a big deal to my husband and me because they’ve always embraced him for who he is, just as they’ve embraced every family member, whatever quirks or other qualities they bring to the table. We are thankful for their acceptance and unconditional love because we know not everyone experiences it at their holiday table.

So, when we gather for Thanksgiving, I’ll bring the potatoes. Nan will make her oyster stuffing. Another family member will bring salads and salmon Nanbanzuke-style (nanbanzuke is a Japanese fish dish).

Our son will bring the joy of song. And I will have much to be thankful for.

boy laying next to his dog

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness during the holiday season, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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To the Loved Ones Who Don’t Get Why We Leave Holiday Dinners Early

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Right around this time of the year, I start to get a warm feeling coursing through my blood. I love everything about the holidays — the sights, the smells and most definitely the foods. Most importantly I love watching the utter joy light up my son Brock’s face. There’s not much that can really put that look on his face, but the holiday season sure does.

My holiday season looks much different then what I imagined when Brock was born. I imagined we’d spend days traveling back and forth between families and gorging ourselves on endless amounts of food. I imagined we’d spend hours upon hours relaxing in the comfort of relatives’ homes, sharing and reminiscing about years past.

That didn’t happen, though. My son has autism and sensory processing disorder, and my idea of what makes holidays wonderful has since changed significantly. The hardest part wasn’t putting my holiday dreams to the wayside, but having to defend myself at every turn to family members and friends who just don’t understand the importance of limiting time for Brock or not being able to attend things at all.

This is what I want each of you to know.

I dread hearing my phone ring around this time of year, but what I dread even more is having to defend my parenting decisions so often. Contrary to popular belief, I love visiting each and every one of you. I don’t like having to tell you that once again we won’t be able to attend your event. Brock’s father and I came to the decision a few years back that we would each pick one Thanksgiving dinner and one Christmas party from each side of our family to attend with Brock during the holidays. Each year we switch it up so we can catch up with other members of our families as well.

The reason we do this is because, whether or not you see it, the holidays are overwhelming for Brock. There’s a lot of behind-the-scenes planning that goes on. We have to prepare Brock for weeks, sometimes even up to a month for all of the events that are going on.

Brock’s schedule is fairly strict — not because we like limiting his activities, but because that is how he thrives. His mind can’t process or handle that much sensory overload. We would love nothing more than to give exceptions for holiday events, but the times we have been more lax have affected him for up to days afterwards. After raising Brock for seven years, I know the exact hour, minute and seconds he can handle attending such things. It may seem odd or extreme to you, but I promise you a lot of work has gone into creating a schedule and forming plans that benefit Brock’s well being.

When you make comments about us cutting out early, it affects us more than I’d like to admit. Having to defend ourselves constantly is off-putting; it makes it really hard for us to want to continue attending these things. In my perfect world, my child wouldn’t have to fight and push himself each day to leave the house. Things like schedules for a 7-year-old wouldn’t exist. We’d be able to live on the wild side and spend our holidays in the car, with stomachs so full of food we can’t move. But they do exist. Autism and sensory processing disorder are a part of Brock, and our main concern will always be him. 

Instead of worrying about those “cutting out short” comments, let’s enjoy the time we do have. And if we can’t make it, please remember we truly wanted to be there, but there’s a good reason if we have to cancel.

Brock with his arm around his sister

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or illness during the holiday season. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Every Neurotypical Person Needs to Hear This Autistic Artist's Poem

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A Montreal-based artist who specializes in photorealistic pencil drawings has lately been using short videos as a form of self-expression. The artist, who goes by “Remrov,” has autism, and on Nov. 17 she uploaded a video of herself reading a poem that explains her experience on the spectrum — and what the rest of the world can do to help people with autism.

The piece, called “Neuro-untypical,” starts off as a crash course of sorts. “I wrote a poem about the most important things people should know about people with autism,” Remrov wrote with the clip.

She then explains that many individuals with autism are sensitive to noise and that interactions may be challenging. “The world in small details, that’s how we see,” she says. “The big picture is hard, I’m sure you’ll agree. It’s true that we often look away, but that doesn’t mean that we don’t care what you say.”

“[I’m] at a point in my life where I want to pass on everything I have learned and everything that helped me to other people with autism and their families and also educators and everyone else interested in the topic,” Remrov wrote on her Facebook page. “I want to create a bridge between the autistic and neurotypical worlds, and I hope to be a voice to non-verbal people with autism.”

I just published a new video in which I explain how my autism effects my artwork. I also share more about the progress…

Posted by Remrov’s World of Autism on Thursday, November 5, 2015

 

For more of Remrov’s videos and art, be sure to visit her Facebook and YouTube pages, along with her website

Editor’s note: A previous version of this article used the artist’s full name. The artist has asked to go by “Remrov.”

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