When My Son Shared How He Feels About Autism

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I’ve written thousands of words about my son, Kreed, over the years. Our perspective on raising him, his journey with communication and the heartache through his vast medical conditions. I’ve had so many conversations over the years with Kreed as well, though most centered around his wants and needs and teaching him to comment on his environment.

There are a couple of moments that pretty much brought me to tears. We initially asked Kreed if he knew what his diagnoses were, and he replied yes and with the word “autism.” We had never asked him this question in 16 years. I would have assumed he knew because it played such a part in his life. So many people talked about it, and I know he’s seen the word on papers. He was in the hospital during this time, so our conversation was limited but powerful.

Some months later, I engaged in a second conversation with Kreed regarding himself — an introduction of sorts straight from him. It’s not for me to say how he feels about autism and what’s hard or not. So rather than write about Kreed’s autism and how he feels, this video of Kreed using his device (Dynavox Compass) to communicate is far more powerful.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

Follow this journey on Kreed’s World and on the Kreed’s World Facebook page.

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When You Think a Child Is ‘Too Old to Be Acting Like That’

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Last week we were all trucking through the chaotic abyss that was Target before Halloween, and I heard a child crying. And by crying I mean losing their freaking mind. My husband and I exchanged a knowing look over our soon-to-be 2-year-old’s head: been there.

We continued shopping, and I turned down an aisle where a 20-something gal was fishing through rows of K-Cups. She sighed loudly each time the invisible child screamed. She rolled her eyes. A young man who worked at the store stepped onto the aisle and started stocking. She, again, sighed loudly – this time for his benefit.

He smiled at her.

“Yeah, he’s annoying everyone in the store,” he said.

As she rolled her eyes, again, I translated in my head: “I would never allow my kids to…” and I smiled to myself. Been there, too.

But then she said something that lit me on fire.

“Yeah, well I saw him. He’s way too old to be acting like that.”

***

When I started writing (fairly) seriously, I basically stumbled, arms flailing, into a group of bloggers. Actually, a friend invited me to a group with a bunch of autism moms in it. As I read through their blogs, I began to see the commonalities and the things that bonded them. I was allowed to watch and learn as they lived it. It turned out, the woman who started the group met many of the other ladies in an autism writer’s group. They eventually started their own group and routinely allow me to bore them with “Hunger Games” and “Doctor Who” references.

They are moms, they are activists, they are researchers, and God Bless – they are hilarious. I’ve never met a more supportive group of women.

My family doesn’t have experience with autism. When I was teaching, I only had two kiddos on the spectrum. I knew of autism, but I didn’t understand it. Yes, I knew the facts and figures. Yes, I had bits of working knowledge and had heard a few anecdotes, but even as a teacher, I didn’t see it every day.

After joining the group, I would scroll through my news feed and see the faces of their children with autism. They are sweet and hilarious. They are impossible and beautiful. They are focused, and stubborn, and they are children, just like all children, who need to be loved and accepted. The more I read about these faces, the more I fell in love with them. I began to see them through their mother’s eyes: their quirks, their bravery and their determination.

***

In Target, I bit my tongue. Hard. Because one day this adorable girl will understand. Maybe not firsthand, but she’ll see it in a friend’s eyes. She’ll see it on a student’s face. Hopefully, someone will teach her about food allergies and clothing sensitivities. About repetitions and stims. Hopefully, someone will explain to her what a “meltdown” really is and how it feels to be discriminated against. I didn’t scold her. I didn’t reprimand her, because the truth is, someone had to teach me, too.

As we left, I saw the boy. He’d pulled it together and stood next to his mother in line – eyes down and holding a small Hot Wheels car. I couldn’t “tell” from looking at him. Just like the 20-something woman couldn’t. But I could tell from looking at her. His mom had it written all over her.

Her shoulders were still back. She didn’t hunch or hide. She didn’t avoid anyone’s eyes. The checker never looked at them as he scanned each item from her overflowing cart, but what he and the other shoppers didn’t know was that she’d won.

She’s not a “bad mother” with a “bad kid.” She’s a warrior who has placed herself squarely in front of every harm that seeks her child. She takes the stares and sneers so he won’t have to. She knows every detail about him, and today she won. They are still in Target. He is quiet, and he is safe. She knew how to help her son, and she’d probably taught him enough that he was able to help, too.

As we passed with our two items, I said Happy Halloween. She smiled. I’d like to think she knew that Happy Halloween really meant, “I see you, and I see him, and you both matter.”

So the next time you’re shopping and hear an invisible child, take a moment before you judge. Because somewhere in that store is a momma doing her very best, and you don’t know the whole story. Maybe it’s a 2-year-old who missed her nap. Maybe it’s a 4-year-old asserting his independence. Or maybe it’s a boy in conflict with the world, whose momma allows him to be invisible when he needs it, and does her best to clear a path for him when he’s ready to be seen.

Follow this journey on Lizadora.com.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Girl Tells Tearful Mom Why She Thought Having Autism Made Her ‘Bad’

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When 7-year-old Cadence, who has autism, was at school one day, she sat under her teacher’s desk and wrote a note to her mother Angela. Cadence wondered if autism made her “bad” after hearing remarks from adults and television programs that portrayed children with autism in a negative light. She wanted to set the record straight.

In the note, which Angela posted on the family’s public Facebook page, Cadence first asked if “being autism” made her “bad,” which prompted Angela to ask what gave her the idea. Cadence wrote about the misconception that being a parent of a child with autism is “hard” and if someone has autism they might “hurt people,” adding that kids who have autism “have to be put in [jail] to keep others safe or tied up.”

“I don’t like hurting people,” Cadence continued. “I don’t like being [scared]. I would be [scared] in a [jail] room. I was born [with] autism but that doesn’t mean I was born bad.”

Then, at the end of the note, Cadence asks her mother, “Are you crying?”

What ‘messages’ are children hearing – from ourselves, from other parents, at school, from media and in the general…

Posted by I am Cadence on Wednesday, November 11, 2015

Angela responded, “Yes. I have happy tears that you know what is true; and I have sad tears because there are lots of people who don’t know what is true.”

Angela captioned the photo of the letter, “This ‘conversation’, between Cadence and myself, started under her teachers desk – a ‘safe place’ where Cadence had put herself in her confusion that she was somehow ‘bad’ – a belief that had culminated from over-hearing other parents and hearing news stories.”

Angela told BuzzFeed News that she hoped the letter would serve as a reminder that the way adults talk about children affects them more than we might think.

“The burden of responsibility for enabling all children to feel safe, accepted and loved, rests with us, the ‘grown-ups’ – and sometimes we need reminding that we don’t always do a good job of it,” Angela told BuzzFeed. “There have, on a handful of occasions, been scenarios where grown ups who are either not familiar with her challenges, or not tolerant of how she experiences the world, have behaved and responded poorly to her. The negative impact on Cadence of these incidents have been very clear.”

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Restaurant 'Fires' Customer Who Berated Employee With Autism

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A restaurant owner in Anchorage, Alaska, is standing up for an employee by “firing” a customer who berated him.

google image of little italy
Photo via Google Maps

On Tuesday, P.J. Gialopsos, who’s owned Little Italy Restaurante for 30 years, announced in a passionate Facebook post that the restaurant will no longer deliver to a customer who called her driver an idiot, among other explicit names, and accused him of being on drugs after mixing up an order. The driver, who has autism and a speech impediment, is a university student who’s worked for the restaurant for two years. After the mixup, he immediately retrieved the right order from his car and returned to the restaurant.

“He… has an amazingly inquisitive personality, a wicked sense of humor and one helluva work ethic!” Gialopsos wrote in a Facebook post that’s since had more than 1,000 shares. “It isn’t the first time I’ve had a comment about this employee, but normally, as soon as I explain, they are always VERY understanding that the mannerisms had a reason.”

“The fact that he has autism doesn’t cross anyone’s mind at the restaurant,” Gialopsos told The Mighty. “We just work, he just works, that’s it. Maybe it’s the mom in me, but I had to write that response.”

This has been pondered for days now: should I write this post and HOW should I write this post? Over the weekend we…

Posted by Little Italy Restaurante on Tuesday, November 10, 2015

 

“You would think, in the year 2015 the majority of the population would have learned or at least heard about autism,” Gialopsos says in her post. “I understand that there is a large portion of our population that is content to remain uninformed and uneducated, but that doesn’t give them [the] right to take that ignorance and turn it into a foul mouthed rant on two of my employees!… Therefore, we have fired this customer.”

The customer’s name, address and phone number is now tagged “DO NOT DELIVER.”

The post concludes:

And won’t that customer be surprised later in life to learn that his ‘idiot strung out’ delivery driver long ago turned out to be the physicist, microbiologist or chemical engineer who could quite possibly make a discovery that will save his sorry *** someday.

Read Gialopsos’ full post here.

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Many Stared at My Son’s Meltdown at Target. One Man Spoke Up

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It takes my son almost exactly 12 minutes to get through a cherry ICEE at Target. That means that I have 12 minutes in which to shop and get through the line. It’s like an un-athletic version of “American Ninja Warrior.” Due to poor planning on my part, I ran out of all three of the foods that my kid eats. It was go time.

Things were looking good. I was nine minutes in as I got in line, and there was still plenty of red slush in the bottom of his cup. I had this thing dialed. I was going to make it. Then it happened…

Someone tripped the security alarm. BEEP! BEEP! BEEP! My boy covered his ears and started screeching. Now, his is no ordinary screech. Princess Buttercup should consider herself lucky that the screeching eels in, “Princess Bride,” didn’t sound like this. It made the old lady next to us turned down her hearing aid and glare. The alarms were finally turned off, but my son continued. He was not upset anymore, but he was on a roll and nothing that I was going to do could stop it. He tossed his ICEE from the cart to the floor, and I searched my purse for wet wipes to clean up the spill.

I felt all the judgmental eyes on me. I heard every rude comment. I cursed the fact that my child’s favorite off-brand cereal was unavailable at any drive-through. I felt the tears stinging my eyes, but I was not going to cry in the grocery store. I was going to be one of those tough moms who make it all the way to the car, and then cry in the parking lot.

I wasn’t going to make it. I was searching for a place to abandon my cart when the man in front of me in line turned around.

If he cursed at me, I was going to break.

“I’m a father of four. Go in front of me. Don’t worry about them,” he said, as he gestured to the onlookers. I thanked him, swiped my credit card, and was out of there in record time.

That father was right. “Don’t worry about them.” It’s part of who we are as parents to want our children to be understood. I wanted nothing more than to sit every one of those people down and educate them about autism, but that was not my job that day. My job was to make sure my child’s needs were met. I was doing that to the best of my ability. (It got easier after I discovered noise-canceling headphone, believe me.)

The world is going to be full of judgmental people. If you don’t believe me, just read the comments on any given post. Anywhere. I realize ignoring the judgment is easier said than done. Am I saying we shouldn’t bother to educate people about autism? Of course not, otherwise I would not burn my retinas everyday on my computer, but sometimes we just need to get through the line.

On that day, my child’s diagnosis was still new. I had not yet grown my thick warrior mom skin. This moment of kindness was everything. When we made it to the car, I did not cry. I made a choice. I chose not to remember the faces of the people who glared. I chose remember the man who helped.

Follow this journey on RaisingJedi and the RaisingJedi Facebook page.

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When I Have ‘the Talk’ With My Son With Autism

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Dear Jack,

So, here we are. We’re having the talk.

Not really, of course. I’m just writing this letter so I can figure out what to say when we do have the talk together — the talk about autism and puberty and sex.

(You know, if you say the words autism and puberty and sex really fast to yourself over and over, it sounds a little like lions and tigers and bears from the scene in the “Wizard of Oz” where they’re all walking through the spooky woods.)

Oh my.

When I was a teenager, my mother always warned us that once we started “going all the way” with someone, we could never go back to just holding hands. That was the whole sex talk, right there. I learned the rest in bits and pieces from movies and books and whispers at sleepovers. I finally put it all together when I watched “Revenge of the Nerds” by myself on a hot summer afternoon, and I was horrified.

The day we learned you had autism, I worried about a bazillion things. Potty training. Whether or not you could ride the bus, or if you’d ever learn to read. How to get you to sleep through the night and eat wet food like peaches and point your finger to let me know you wanted juice.

And then there were things I never thought to worry about, like excessive nail-biting, which you do now, and excessive swearing, which you also do now. Anxiety, and important-sounding words like cognitive flexibility and executive functioning.

And puberty. I never, ever worried about puberty.

Jack, puberty is the time in your life when you’ll become capable of reproducing, and hair will start growing in weird places and hormones are going skyrocket through your veins like electrical currents. It can be scary and unpredictable.

You and autism do not like things that are scary and unpredictable.

In fifth grade, you watched the movie. You know, the movie.

We had the chance to pull you out of it — to ask that you skip watching it in case you weren’t ready. But I’m a coward, and so I figured it was best you learn it from the movie so I didn’t have to explain it to you myself. That’s just good parenting right there.

As soon as you got off the bus that day, you shouted, “My day was the worsted.”

“Why? What happened?”

“They made me watch. An inappropriate movie.”

“Huh.”

I didn’t ask what it was about. I didn’t ask what you’d learned from it. Like a turtle in my shell, I scuttled up the driveway and asked you what you wanted for a snack instead. That’s just good parenting right there.

Remember when we were all in the car a few weeks ago, and there was a lull in the radio and conversation, and you asked, “What is the sex. What does it mean.”

I glanced nervously at your dad, who was staring straight ahead, and from the third row of the minivan, 12-year old Joey groaned. “Can we not do this right now?”

I did a quarter-turn in my seat to look at you — I wanted to turn all the way around, but you know how I get carsick when I face backwards in a moving car — and used my best counselor-therapist-don’t-worry-we-got-this voice.

“Jack, that is a very important question. And I want to give you my best answer. So I’m going to—”

“Turn it. Back up. For the radio.”

“Absolutely!” Daddy answered and reached for the dial.

I was relieved, to be honest. I was happy to turn the radio up and let Justin Bieber’s voice fill the silence. Explaining the mechanics of sex to you scares me, because honestly, you can barely handle a two-armed hug — it’s nearly unimaginable how you’ll process the, ah, other parts of intimacy.

Although you’ve always been a little big for your age, your body, mind and body were usually in symbiotic rhythm together; they were pretty much on the same page of the development book. But now that you’re 11, your body is bustling forward like some fast-paced science fiction thriller, while your brain is still reading “Goodnight Moon.”

You usually prefer spending time with girls instead of boys. I used to think maybe you were a little confused about gender — the same way you didn’t understand why men don’t wear lipstick — but eventually I realized girls are simply easier for you. They tend to be expressive, animated, easy-to-read. They listen closely.

Unfortunately for you, Jack-a-boo, the rules are going to change soon, and if there’s anything you and autism both loathe, it’s when the rules change.

But with adolescence comes an inevitable shift in the way girls and boys interact. Teen girls turn to nonverbal cues to communicate their message: The rolling eye, the deep sigh, the barely perceptible shrug of delicate shoulders. Their code is subtle, nuanced.

Maybe I didn’t know enough to worry about puberty when the doctor first announced you had autism, but I did know enough to worry you would be lonely. Every day since then, I prayed you wouldn’t be lonely.

For a while I prayed you would find a nice, quirky girl and you would date her and eventually get married and maybe — fingers crossed — have one or two quirky children of your own. Basically, I wanted you to follow my own recipe for love and happiness — with an added dash of the unusual.

But it occurred to me about a year ago that I don’t want you to borrow the world through my lens. I want you to see it and live it and love it for yourself.

Jack-a-boo, I don’t care if love someone of a different race, or religion, or ethnicity. Man, woman, or purple-people eater, it doesn’t matter to me. It matters that you are kind to one another, that you care about one another, that you laugh until your sides ache and cry together at the same movies.

My own rules are changing. Autism has done that for me.

As for your question in the car, I never did answer you. You didn’t ask again, but when you do, I know what I want to tell you.

I want to tell you sex is the ultimate in togetherness, and it can be the most open kind of communication two people can ever have. It brings up big feelings, yet there is nothing to fear.

I want you to know how even people with supposedly neurotypical brains — brains that are wired to accept change and enjoy hugs — find sex confusing and alarming and fun and exhilarating and sad and hopeful.

If you choose, it can bring forth life.

I want to tell you how much I worry that you won’t be able to feel this kind of intimacy and closeness; that you’ll remain uninvolved and distant because you’re confused by the occasional eye roll or shrug of the shoulders.

As for puberty, well, that’s a lot like walking through the deep, dark woods. It’s scary and often lonely. There will be pimples, and at some points, you may lose your way. But on the other side is a beautiful field of bright, lovely flowers.

I won’t tell you any of this, though. Not yet, anyway.

I made the decision not to tell you when I watched you walk out the door into the cool, dark night on Halloween. You had on a Tony Stewart costume that was way too small for you because we couldn’t find one to fit someone as tall as you. The pants stopped just below your knees, and the sleeves barely made it past your elbow.

You walked out the door next to a girl in your class, Cee Cee, and just as you reached the steps she said, “Come on, Jack. We’ll stay together.”

So next time you ask about sex, I will wrap both of my arms around you and pull you close. I will remember that it doesn’t really matter if you’re reading a thriller or a children’s classic — you still have to turn the first page.

“Jack, one day, you may want to hold someone’s hand.”

Follow this journey on Carriecariello.com.

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