7 Reasons I Wish I Could Be More Like My Son With Autism

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I just made a hotel reservation in Chicago for a family wedding. It’s one of my favorite places. My son Evan isn’t crazy about the Windy City — or any city — because there are too many sirens. During the call, I informed the reservation specialist that my son has autism and requested a room on a higher floor to help minimize street noise. She said she was going to note the request was based on a “child’s medical condition.”

She thought she was doing me a favor by not disclosing Evan’s diagnosis. I asked her to please use the word “autism” so the hotel staff would understand the nature of the request. A “medical condition” sounded vague and didn’t make sense in the context of this request.

I am all about education and raising awareness so people are more understanding of those who are different, and I am not ashamed of Evan’s autism. I am envious of so many aspects of his personality, many of which I think are shaped by his autism. Sometimes I wish I could be more like my son. I have at least seven reasons I wish I could be more like Evan.

1. He is comfortable in his own skin.

When we explained the concept of embarrassment to him, he asked if it hurts when your face turns red. I know embarrassment is a useful emotion. But I’d often be better off without all that worry that comes with embarrassment.

Evan is the kind of person who will dance like nobody’s watching. Plus, he wants everyone watching to join him (which is why he can be the life of the party; see number three).

2. He can spell.

I’d be lost without spellcheck. Evan is my spellcheck. He has an incredible memory that makes spelling a cinch for him. He could easily be the school’s secret weapon in a spelling bee.

Fortunately, I have Evan and a computer with spellcheck. Unfortunately, the computer doesn’t catch every mistake and, as a freelance writer and blogger, there is nothing more embarrassing than a spelling or grammar mistake (except missing a deadline).

3. Evan is a life-of-the-party kind of guy.

He knows how to engage people, and he attempts to interact with others more than anyone I know. For example, he has learned that reading a name tag and then addressing a waitress by her name is a great way to encourage conversation and make someone feel important.

His peers don’t always know what to make of his friendly banter; adults, for the most part, are amused and awed by Evan and his complimentary ways. If you’re a girl with lots of ringlets, expect him to start a conversation with “I love your curls.”

Last summer, on a particularly hot and sunny day, Evan had the majority of our community swimming pool — kids and adults — playing his version of Marco Polo. The game consisted of Evan saying “Marco” and waiting for people to respond appropriately. When they did, they were rewarded with an exuberant “You said it. You won.”

Also last summer, we were at a festival and the bathrooms had no sinks or hand sanitizer. I was too embarrassed to ask for the sanitizer from more than a few moms waiting in the food line with me, but Evan enthusiastically accepted the task by marching up and down the line and asking everyone until he found some.

4. People remember him.

Like Norm on “Cheers,” wherever we go we’re often greeted by a chorus of “Hi, Evan.” The downside of this is it sometimes makes his siblings feel invisible, but on the whole people tend to be drawn toward those who are perceived as fun and outgoing, and Evan can be both with a splash of childhood charm and quirkiness.

Last year he participated with more than 100 other kids in a one-week program that teaches individuals with special needs how to ride a bike. When the director returned this year, the one kid she remembered was Evan because of his outgoing personality.

5. He isn’t afraid of any amusement park ride…

…except the ones that might be dark. Last time we went to Cedar Point, “the Roller Coaster Capital of the World,” it was the first time Evan was tall enough to ride some of the scarier thrill rides and coasters. I did spike his hair (but just a bit) because he was technically a hair (pun intended) shy of 48 inches.

He loved them all. Nothing was too fast, too high or too much of a puke machine for this 9-year-old daredevil.

Watching my son ride roller coasters that scare the living daylights out of me is, well, humbling, to say the least. I couldn’t help but wish I had the guts to ride alongside Evan as he was having the “best day ever.”

6. Small things bring him great joy.

You can see the excitement and enthusiasm in his face. And if you can’t, he’s the first to tell you how much he loves something in a tone that replicates the exuberance of a lottery winner or Heisman Trophy recipient.

How great it must be to experience such pure and spontaneous joy on a daily basis. I find it regularly in the simple things like cuddling my kids or watching them play nicely together. I also experience that level of happiness when I’m enjoying an outdoor activity, attending a baseball game or traveling. But, the difference between me and Evan is that I usually have to consciously think about it, while he just seems to experience it.

boy playing with microphone
Jennifer’s son Evan

7. When he wants to learn or master a new skill, Evan finds the determination and focus to work hard at achieving his goal.

Whatever activity Evan is interested in, he can work at it for hours. Right now it’s gymnastics. He practices handstands, front walkovers, cartwheels and one-handed cartwheels for hours at a time.

I’m jealous he has the ability to work hard at mastering his most sought-after skills. In the past few years I have wanted to learn to play piano, take up violin, write a book and start a blog. One out of four isn’t bad.

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

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Talking With My Son About His Autism

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Jake in Costa Rica “Just as no two snowflakes are the same and everyone has a unique set of fingerprints, there are shades of autism,” I tell my 12-year-old son.

The older he gets, the more aware he has become of others who hold the same diagnosis he does.

“Mom, this boy at tutoring is weird. He does stuff without asking the teachers. He just gets up and starts going through their things.”

I nod and say little, knowing what is coming next. My eyes on the road.

“He has autism like me. Do I act weird too?”

“Everyone’s autism is different. Remember I explained it’s a spectrum? Think of it like a rainbow. Some people are on one side of the rainbow keeping their eyes out for the pot of gold while others are just starting to lift off from the cloud. In between there are all kinds of travelers.”

He’s quiet as he looks out the window of the car, processing what I said.

“Well, what about that one boy from school? He’s attacked kids, and he has autism. I don’t ever touch anyone else.”

“Yes, I know. Some people get aggressive when they’re feeling overwhelmed.”

I steal myself for the next probing question. I try to keep my answers short and factual; he has a way of cutting through all the bullsh*t, so there’s no point in trying to serve any up.

It’s one of my favorite things about him. The truth is his crutch.

“How do you know I have autism? If my autism is so different than all the kids I see, maybe I don’t have it.”

I grip the wheel tighter, preparing myself for this very important conversation. My son is too smart to answer with anything but the truth. I long for the days when a true but vague answer would buy me time.

“Remember Dr. Kartright?” — referencing the expert who had diagnosed him just two years earlier.

“Yes.”

“Remember all those tests and questions she and you spent the better part of a day working through? Well that test is designed to identify autism. The questions are specific and based upon your answers; her observations and the answers provided by Dad and I, along with your school, she is able to say with certainty that you fall on the autism spectrum.”

The rain sprinkles on my windshield, and the quiet in the car is interrupted from the wipers swishing back and forth, erasing the droplets that just fell. The sun has set, and the darkness is enveloping us; the traffic lights are shining brighter in the
evening sky. He is again quiet, watching the rain fall and as the reminders of
it are swooshed off the glass.

“How did I catch autism?” he asks.

“Well, you don’t catch it like the flu; you are born with it,” I say, grateful he comes to me with these questions instead of burying them deep.

“Why do I have autism and no one else in our family has it?”

“You know how every person is made up of chromosomes, a collection of recessive and dominant genes? Like Dad has black hair and your aunt has blond? Well, it’s just the way the genes are aligned that make every person different, even if they have the same parents. It’s like how you love history and your sister doesn’t. It’s all those differences that make every one of us unique.”

He accepts my response.

Quietly we cross over the intersection, the rain hitting the car louder. My heart is full of ache for my son who is trying so hard to figure out where on the spectrum he falls. It’s a moving target and exponentially difficult to explain to a 12-year-old boy who just wants to understand this world and where he fits in it.

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Superheroes and Sidekicks: Teaching and Learning From My Daughter With Autism

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Over the years, I’ve been exposed to a wide variety of superheroes. My oldest son loved “Justice League”– Flash was his favorite. He had the costume and darted around the house like lightning. The “Justice League” was a team, each doing his or her part to solve the problem — to save the world.

My youngest now loves “Star Wars.” He carries a light saber on his belt loop. He watches light saber videos on YouTube. He says he’s from “the dark side” (watch out). In “Star Wars,” the apprentice learns alongside the master teacher until he is ready to go out on his own.

Sometimes people call moms “superheroes.” And quite frankly, we are. We are master teachers — or at least trying to be. We have apprentices at our side—little “sidekicks.”

I have three “sidekicks” or apprentices. Two of them are becoming more independent every day. They’re soaring and flying in new ways all the time. I love watching them venture out, but I’m there to catch them if they fall, too.

My daughter is 12, but she’s still my sidekick in many ways. Having autism means she gets to be an apprentice a little longer. And that’s OK.

When we go places in public and there are too many people, and she feels scared, I come to her rescue. I help her, I teach her. She stays by my side like a loyal sidekick; she trusts me.

At school she has a 1:1 aide. Her aide is like her master teacher — my daughter is learning the ropes right along side her. Sometimes her aide lets her fly solo, but she’s always there to catch her fall. That’s what superheroes do.

At church youth events, she is my sidekick… for now. She’s venturing into new territory and needs someone to help her learn. I’m happy to be her master teacher. But I know with time, she will rise to a new level.

She’s had the help of superheroes, master teachers, all along the way. Therapists, aides, doctors, friends, siblings, parents. Her own little “Justice League” working alongside her to save the world, to make her world safer.

Superheroes and sidekicks. The master and the apprentice. They work together.

You want to know something, though? Sometimes I don’t feel like the superhero — I think my daughter is. She’s facing the world in a way I can’t possibly understand, and that makes her braver than me. She’s like my master teacher, and she’s my superhero. She’s taught me more than I could possibly teacher her. But I’ll fill in the role of “superhero” until she realizes she’s had superhero powers all along. One day she’s going to fly away and take the lead, and I’ll be the one left behind.

No matter what, we’ll always be a team, and I’ll be there to catch her when she falls.

Follow this journey on The Special Reds.

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Autism Awareness, the Puzzle Piece Symbol and Tattoos

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boy with arm around him that has a tattoo of a puzzle piece
Photo courtesy of Ink4Autism

April 2 is Autism Awareness Day; however, people who advocate for autism awareness like myself, well… we take the whole month of April; and parents of children with autism, like myself… we do it every month, every day. We actually use 365 days a year to spread autism awareness.

Autism spectrum disorder (ASD) is a neurological disorder. Often people with ASD are referred to as being “on the spectrum.” Challenges of ASD vary from person to person.

The puzzle piece is the well known symbol for autism. Over the years, there have been many debates over it. Some advocates argue it implies something is missing from people on the spectrum, or implies they aren’t whole. Gerald Gasson, a parent board member for the National Autistic Society (FKA The Society of Autistic Children) created the symbol in London in 1963. The board viewed autism as a “puzzling” condition… hence the puzzle piece.

I believe it’s up for interpretation.

I, like so many other parents of children with autism, found support online after my daughter’s diagnosis. I found each person had his or her own story to tell, and I quickly realized we all wanted the same thing for our autistic children or loved ones: awareness and acceptance. Not long after arriving in my new community of fellow parents with autistic children, I heard all about one of the biggest autism awareness pages on Facebook, Ink4Autism. This guy was spreading some major awareness, and he inspired me to want to do the same.

Awareness can be done and seen in so many ways: bumper stickers, charity walks, personal blogs (like mine), fundraisers and even tattoos… yes, tattoos.

Autism tattoos take on many forms, from the puzzle piece designs, to a butterfly with puzzle piece wings, I’ve even seen the Superman emblem in puzzle piece design. No tattoo is the same, which is true with autistics. “If you’ve  met one person with autism, you’ve met one person with autism” and my personal favorite mantra, “Different does not mean less!”

I had the pleasure of speaking with Jack Skorochod, founder of Ink4Autism. Jack spreads autism awareness with more than 100,000 followers. Ink4Autism is one of my go-to pages for so many in the autism community; I had to know how and why he started his cause.

This guy looks pretty tough — covered in ink from I’m guessing head to toe. Some may say he is intimidating. In speaking with him, he definitely smashes the stigma that tattoos are just for tough guys. He’s a husband, a father, has a passion for tattoos and a love for his family.

We spoke about his organization and how it came to life:

I’ve always been into tattoos, even at a young age. I’ve always loved the beauty of them. Although, I didn’t get my first tattoo until I was 30 years old. Yeah, but I’ve more than made up for it since then. I have tattoos dedicated to my wife, sons, family, as well as some memorial tattoos. When my son Lincoln was diagnosed with autism at 5 years old, it seemed only natural that I get a tattoo to show respect and honor to his autism.

The idea for Ink4Autism happened in November 2011 when Jack had stopped into one of the many tattoo shops he regularly frequented. It was at this time that he walked into the Lost Anchor Tattoo Parlor while they were running the “Movember” fundraising campaign. Movember is an annual fundraising event where people grow out mustaches to raise awareness for various cancers, like prostate cancer. This shop was doing mustache tattoos with the proceeds being donated to the campaign.

“A lightbulb went off,” Jack told me. “Why not for autism?”

The switch was flipped, and Ink4Autism was born. Even with a massive following, Jack is humble, and the passion he has for his cause shines through. He is a true advocate. He told me:

My first year I managed to get 18 shops in the U.S. and here in Canada to take part. Some were friends of mine, others were shop owners that I had found online that had already done some fundraising events at their shops, so I knew they would be open to helping out for autism, and thanks to social media, other shop owners found out about it and they contacted me to join and support the cause. People would find out about it through our Facebook page, and they would tell their artist friends about it. By the second year I had about 75 shops and had added Australia and the United Kingdom to the list, and it has continued to grow each year.

Since 2012, I4A has been helping spread autism awareness on a permanent level. During the month of April, you can go into a participating shop to get an autism-themed tattoo, and the funds are donated to numerous autism charities. Tattoo shops in 11 different countries around the world have participated in this campaign, and since 2012 Ink4Autism raised more than $80,000 for autism services.

Jack told me:

Our autism tattoos act as a permanent showing of love for those with autism in our lives. We are smashing the stigma that tattoos are for thugs, and we are raising awareness for autism at the same time. I will proudly display that inked love until the day I die. I love hearing the stories of people who never would think about getting a tattoo, and they are getting an autism tattoo to support their loved ones with autism, and to me the most touching tattoos are the sibling pieces. As a dad, watching that kind of support from a sibling is incredible, something I get to witness every day with my own kids.

I personally love the puzzle piece, and I don’t agree that it implies something is missing from my child; my daughter was the missing piece to my life’s giant puzzle, and now I have my lost piece.

I asked Jack what the puzzle piece symbol meant to him and this was his answer:

I see the puzzle piece as the mystery of autism. It’s just one of the parts that make up my son. I know others don’t see it that way, and it’s all right to have someone see something differently than I do… and neither of us is wrong because we are all on the same path.

Yes, we all want awareness, acceptance, and inclusion for all… and a tattoo. I think I really want a tattoo now.

Follow this journey on Melissa’s Facebook page.

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Easter Bunny Makes Accommodations for Kids With Autism

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Meeting the Easter Bunny can be an overwhelming experience for anyone, but for a child who experiences sensory overload or finds routine changes uncomfortable, it can be particularly difficult. Many kids with autism or sensory challenges want to participate in a day with the Easter Bunny at the mall, but are met with large crowds and chaos. So, a few autism organizations came up with a solution to this: the “Caring Bunny,” who’s accommodating to children with different needs.

At sessions with the Caring Bunny, music is off and bright lights are turned down. There are no crowds or long lines because you make a reservation. The environment is controlled and comfortable.

Tricia Taylor, whose 7-year-old daughter Gracie has autism, attended a Caring Bunny event at the Southdale Center in Edina, Minnesota, set up by the Autism Society of Minnesota (AuSM).

“Everybody is so patient with the kids,” Taylor told KSTP-TV. “It’s wonderful.”

Kelly Thomalla, AuSM’s Director of Marketing and Communications, says the response to “Caring Bunny” events has been positive.

“Families and individuals with sensory needs are excited to be afforded the chance to visit with the Easter Bunny… in environments that make them feel welcome, included and loved,” she told The Mighty in an email.

The “Caring Bunny,” sometimes known as the “Sensitive Bunny” is modeled after the success of “Sensitive Santa” — a popular program that allows kids with special needs to meet Santa in a comfortable setting.

For a list of other Caring Bunny events in the country,  head here.

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To Rachel Platten, Whose Song Showed Me I Don't Have to Be Alone

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To Rachel Platten,

I know you don’t know me. I’m one of the many fans you have found along your way. I wanted to share with you that your song “Stand By You” has allowed me to feel hope and love in ways I had previously not known were possible.

Let me give you a little background for this letter. I am at a hard place in my life. Last year my son was diagnosed with autism, generalized anxiety disorder and sensory processing disorder. This year another heavy diagnosis was added, eosinophilic esophagitis. Shortly after, we were told my younger son also has autism, generalized anxiety disorder and showed signs of obsessive-compulsive disorder.

These things were hard for me to fully accept, although I may have known inside for some time. I feel these things changed who I am as a mother and who I am as a person.

two women wearing black tank tops selfie
Casey (left) and her friend.

A few months back, a dear friend of mine sent this song to me and told me this song was written for us. This friend has been there for me no matter what. This woman is so strong, the most mature and clear-headed person I know. I could go on for days about what she has done for me, and for herself. Still, as we get older and have more kids and responsibilities, it becomes harder and harder to find time together. She, another woman and I try to make sure we see each other from time to time and stay in touch via text, probably more often than our husbands would care for. This song has become our anthem.

She sent this to me and I cried. This song brought me to my knees. My son had just been told he could no longer have milk, soy, wheat, eggs, nuts/tree nuts and fish/shellfish until we could hopefully figure out what trigger food was making his esophagus close. I was thrown into another world, especially when paired with existing eating and sensory issues. I felt broken and fearful.

Relationships have always been hard for me. Friendships are few and far between because I have a tendency to stay on the peripheral, pushing people away rather than opening up. The support my friends haven given me and listening to your song have pushed me to be someone who is there for others. It has given me hope that I can do this.

This song shows me I do not have to be alone. It pushed me to open myself up and accept others in what could have been a dark time. This song, and the support behind it, has allowed me to grow into the person I was meant to be.

Ms. Platten, I’m not sure if you wrote this song based on a personal experience or if the song was sent to you by a muse. I’m not even sure if you wrote it, co-wrote it or just chose to create it. Still, I believe every word with all of my heart, and you express them so beautifully. Thank you for this amazing song. Thank you for giving hope a song.

The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo courtesy of YouTube/Rachel Platten Vevo

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