Why I Chose to Be the Sidekick of My Son on the Autism Spectrum

2k
2k
12

I know a lot about electric hand dryers, more than I’ve got any business knowing. I know that the World Dryer Model A features a more comforting decibel than most dryers, despite its mediocre hand-drying capability. You’ll find this one in most fast-food joints and musty playground bathrooms.

I know that the Electric-Aire is small and also a quieter machine. This one is also so-so in the hand-drying department, and you’ll find these in smaller stores kind enough to be equipped with public restrooms.

Then there’s the Excel Dryer. It’s pretty loud and strong for its small size, but it doesn’t hold a candle to the ubiquitous and mighty Xlerator. It flaunts its brawn as a large, round-edged box with a sleek, built-in spout, sporting a tattoo that dares you to “Feel the Power.”

I know all this because it’s my son’s business. Not that he sells them or manufactures them. He did try to order an Xlerator online a few times, for the tidy sum of $500. He’s made it his business to know all there is to know about electric hand dryers, particularly the Xlerator. It’s the windmill to his Don Quixote. He has been terrified and fascinated by it since he was a toddler. He’s 7 now, and whenever we go somewhere new, he needs to know 1) If there’s a public bathroom and 2) What type of hand dryer it has, if any.

To know this, he must inspect the bathrooms. If the bathrooms carry a brand of hand dryer he’s not familiar with, he will stand outside the bathroom until someone washes their hands and uses it. He will tip toe to the door and see how it works, how it sounds. Only then will he resume any planned activity with peace of mind.

When our son was diagnosed with autism spectrum disorder and ADHD, he was already 5. Despite our concerns earlier on, it wasn’t until doctors noticed his repetitive round of questions and short attention span that they caught up to what we were already sensing.

When he was younger, he seemed like a very bright little boy, which he still is today. What we saw as unusual, they saw as cute quirks. Like the fact he needed to own a minimum of 13 tubes of toothpaste at a time. If we got down to 12, we’d need to go shopping. Thankfully, this only happened for about a year from age 3 to 4.

So as a parent, what do you do? Long before he was born, I made it my mission, like all parents, to be there and help him through life until he got the swing of things. So I did the only thing I could do. I became Sancho Panza. Yes, I became my son’s sidekick.

For those who know that Sancho was humoring the Man of La Mancha so he can access the old fool’s gold, you may question the logic of my plan. But you see, just like Sancho, I’m mining for gold in my son’s reasoning, within reason.

My son is no fool. He is smart and imaginative and funny and adorable. He’s friendly and caring and quick, but his mind works differently. The trick is finding out what I can about how his unique reasoning works.

So when his toothpaste supply came down to 10 tubes, I’d call him in. “We’ve only got 10! What do we do?” I’d ask. Then we’d run to the drugstore, where he’d gallop like a man on an important mission, and I’d trot behind him, observing. The tubes of kids’ toothpastes had different characters on them. He’d run out of the one with Thomas the Tank Engine. There was a new one for girls with Disney princesses on them. I, like any good sidekick, would help keep track of what he needed. And when he wasn’t looking, I checked the expiration dates on them to make sure they could all get used in good time. Then he began phasing out on the mission, going from 13 tubes to only two. Now he doesn’t even notice when he’s running out.

In the two years since he was officially diagnosed, we’ve had to catch up quick to advocate for what he needs. With so much time to make up, I choose to let my son be my guide. And so far, it hasn’t failed me. Through our adventures, I’m able to better gauge some of his reasoning to his therapists, his teachers, our family and the rest of the world around us.

Though I haven’t cracked the code on his fascination with hand dryers, it’s helped me understand how he tackles his fears. When he’s outside of the house, he runs like a bat out of hell at the sight of an Xlerator. When he goes home, he watches YouTube videos on how they’re installed, what makes them work, the variety of models. He prepares for another day.

And I follow dutifully by his side, hoping to see that day when he does conquer it or if not, to mine one more piece of gold from him so maybe together we can next time.

This summer we got closer to the dream. He agreed to go to a movie theater and sit through an entire film. There I discovered the holy grail of hand dryers. It’s sleek and efficient and futuristic. I ran to tell him about it. “You’ve got to try it,” I pleaded. “It’s not that loud and dries your hands in 12 seconds. It’s awesome!”

Intrigued, he ran to check it out, with his dad in tow. I paced the floor, eager to find out how it went as he skipped out, looking pretty pleased. “So, wasn’t it cool?” I gushed. “Yeah!” he said. “It’s a Dyson.” One mighty blow for the windmill …

Our new mission: Jeopardy contestants. He memorizes their names, their total wins and days on the game. When they win for long streaks, it’s nuclear devastation when they finally lose. I do my best to console him, and it takes a lot. “Don’t worry, they’ll be back,” I promise. “There’s a Tournament of Champions.” He sniffles and smiles.

Gotta go, time to get the armor and saddle up.

Lead photo source: Thinkstock Images

2k
2k
12
TOPICS
,
JOIN THE CONVERSATION

How Twenty One Pilots Helped Me Understand My Daughter's Stim

3k
3k
19

My daughter, Zoey, is 4 years old, autistic and is considered nonverbal.

She can’t tell me her wants or needs or if she’s hurt or sick, and as her mom, I want and need to know these things. Through intense early intervention therapies, Zoey has come such a long way, and it has been one hell of a ride.

I found I could communicate with her through music, and soon my nonverbal daughter started singing — not talking — singing. 

There’s a song for just about every scenario in our house. If she says no, then you will hear her sing, “No more monkeys jumping on the bed …” Yep, that’s her rendition of the word “no.”

“Twinkle, Twinkle, Little Star” was her first song, and it’s her go-to song if she’s angry or needs to escape from an over-stimulating situation or just from the world. 

I watch this gorgeous child stand while putting her hand up in the air as she stares into her palm like she’s seeing magic in her hands that no one else can see. And yeah, I wish I could see it! I watch her when this happens, and I’m jealous — like really jealous. This one particular stim is amazing. 

She has many stims like rocking and banging her head when she’s trying to soothe herself. And she’s a sensory seeker, so she has to touch and feel everything. Sand and water are her absolute faves!

But this one stim is beautiful, and when she does it, I can’t help but ask her every single time, “Zoey what do you see, my love? Is it beautiful? You make it seem so amazingly beautiful.”

Oh, how I wish I could see what she sees.

I’m jealous.

She does this stim all throughout her day with a huge smile on her face, so I know that it’s angelic whatever it is that she sees — it’s heavenly to her. Seriously, who wouldn’t want to see that? I tried to figure it out for two years, and I never could until recently with the help of her new favorite song.

Zoey and I jam out to music all day and night. Zoey is fast-paced, and she’s not the kind of kid to sit in front of the TV. In fact, when it’s on, she actually shuts it off herself. I love all kinds of music and so does Zoey. 

She likes “See You Again” by Carrie Underwood, “My Wish” by Rascal Flatts, Beethoven’s “Moonlight” Sonata and Michael Bublé’s song “Lost.” She also loves Imagine Dragons and digs Elvis, too. So I am never surprised when a particular song touches her. She’s had so many different types of therapies, but nothing has done for her what music has done for her. 

Zoey communicates through music, and it’s awesome. I love it because I love music, too. It’s our connection.

Recently, I have been listening to a new band, and she digs them a lot. She comes running from her room when I start playing the Twenty One Pilots song “Ride.” And it’s not a little jog. I’m talking about a full-on sprint because she doesn’t want to miss the song. That’s how the Beastie Boys were for me at her age, so I know how much she likes this band. 

I had their video on our TV via YouTube, and she actually sat and watched it. Seriously, this kid doesn’t do TV, so I was shocked she didn’t try to move or shut it off. She heard her song, and she was watching them sing it on our TV

A very cool moment.

I had never seen this video, so I was into it, too. Then I saw her stim. The video was dark and then went to a bright light — darkness to light. Zoey stood up and put her hand up in the air. She had a huge smile on her face as she gazed at her palm, and then she closed her eyes — still smiling. She began to twirl and spin right where she stood. She was dancing, in her own way, to her own beat as the music played.

I finally understood.

I get it.

I’ve been thinking too much about it.

It’s really just as simple as this — it’s her pure joy and love for something.

Whenever things seem to go dark, she can find a way to see through to the light. And to me, she is pure light! 

Her world is music. She’s the lead singer. She wants to dance to her own beat to her favorite song. Yes, it’s a beautiful thing to see her in her world, and I’m taking my time here and so glad she let me in on her ride.

Follow this journey on Melissa’s Facebook page.

3k
3k
19
JOIN THE CONVERSATION

To the Mom Who's Scared of an Autism Diagnosis for Your Child

2k
2k
11

Dear mom who’s scared of an autism diagnosis for your child,

I get it. I’ve been there, too.

I told myself he would “grow out of it.” He didn’t.  My friends told me it was “just a boy thing.” But it wasn’t. I chalked up our challenges to his prematurity, to the fact that he is a twin.

I get it. An autism diagnosis can feel scary at first. You’re worried about what people will think of him. You’re worried about labels and stigmas, and the fact that what you know about autism at this point doesn’t match what you know about your child.

Your child is special, amazing, unique. But he also faces challenges that can be confusing and sometimes exhausting to you. It can be hard to chase, coax, soothe, please and defend when you walk out the door, enter a store, introduce a new food or visit a relative’s house.

Dear, dear mama — hear me now.

You are a good mom.

You are a good mom because you are trying.

You are a good mom because you are worrying and wondering.

You are a good mom because you are seeking answers, even if the answers might scare you at first.

I was scared, too, so for a long time, I ignored it; I hoped he would “grow out of it.” I forced myself to be “better” so he would be “better,” too. But things only got more confusing because I couldn’t explain away his behavior anymore, not to my family, or to friends, or to myself.

So I took the leap and sought professional help for the answer. And it came: autism.

It crushed me and put me back together all at the same time. It suddenly all made sense; all the pieces that were simultaneously foreign and familiar.

They fit.

I finally had a name for everything we had been experiencing for eight years.

And you know what? My son — my beautiful, funny, loving, quirky son — didn’t change because we got the diagnosis. He was autistic all along. We just didn’t have the words to explain our reality.

But when we did, when we knew the word and accepted the word and said the word — autism — things changed.

It was the key to open the doors we needed to get help for our son, and for us too. Autism opened the doors to therapy, to counseling, to school support. But even more than that, it opened the doors to understanding, to compassion, to greater patience, to better parenting.

It helped me accept my son… and myself.

I wasn’t a bad parent. And neither are you. I was just scared. I know you are, too.

But here’s the truth: autism may not have been the path you would have chosen before, but if your child is autistic, you’re already on it.

Right now, you’re in the dark. But a diagnosis turns on the lights. It’s blinding for a little while, but then? You’ll be able to see.

You’ll be able see your child for who he really is, with all his gifts and challenges, his possibilities and potential.

You’ll see yourself more clearly too, more gracefully and tenderly.

And you’ll be able to see where you end and where others begin.

Seeking a diagnosis is a big step. It can feel huge and scary. The truth always is. But you can do it. You can take this step. Because you’re a good mom, and all good moms are brave.

Wishing you all the love, peace, and joy in the world, because you have so much good in store for you,
A mom of an autistic child

Image via Thinkstock Images

2k
2k
11
TOPICS
JOIN THE CONVERSATION

Why I Love It's a Small World as Someone on the Autism Spectrum

111
111
0

If you’re like me, every few years growing up, you’d spend a good amount of time at a Disney theme park with your family, friends, sweetheart or siblings. Maybe you enjoyed getting wet on Splash Mountain, singing “Yo-ho-ho a pirate’s life for me” on the Pirates of the Caribbean ride, watching singing parrots in the Enchanted Tiki Room or getting your picture taken with Mickey and Minnie. And maybe you either dragged someone (or got dragged by someone else) to be subjected to 15 minutes of riding in a slow-moving boat and watching a bunch of dolls in an abstract, colorful atmosphere singing the exact same song over and over again.

Yup, you guessed it. It’s a Small World.

Today, if you asked anybody over the age of 9 about that ride, a lot of them might admit to a fairly passionate hatred toward the classic Disney gem. Why do so many people dislike It’s a Small World? The most common reason I’ve found is the horribly catchy song that’s endlessly repeated and stays stuck in your head when the ride is over. Others say it’s the animatronic dolls. Some would even argue that, compared to other Disney rides like Pirates of the Caribbean and the Haunted Mansion, its architecture and feel is not nearly authentic enough.

The reasons why some people dislike this ride can go on and on. But the question I really want to answer is: why do I like It’s a Small World when many others don’t?

You probably wouldn’t expect a nearly 21-year old male to say he loves It’s a Small World, a ride that mainly appeals to young kids and their parents. And you probably wouldn’t expect to hear that I actually enjoy the song playing during the ride. For one, I understand the context behind the ride: Countries around the world are presented with representations of their people and cultures, and combined with the lyrics, the ride delivers a powerful message that all people and nations are equal. Everyone experiences love, hatred, disappointment, hopes, dreams and desires, but our differences can make us oblivious to that. I also like the ride because of the artistry and detail throughout. Sure, it doesn’t have Pirates’ ability to transport you to another time and place, or the Mansion’s highly detailed technicality through special effects, but it still has the vibrant, colorful artistry of Mary Blair that inspires the young and the young at heart.

But I think the most significant reason I never grew to despise this ride is because it’s one of those rides that accommodates my sensory issues. A trip to a theme park can be both a thrill and a nightmare for someone like me on the autism spectrum — lots of people everywhere, loud noises all around, waiting in long lines only so the ride can break down… It can really be tough for anyone sensitive to sound, touch or atmosphere. Growing up, I would avoid several rides, such as The Matterhorn Bobsleds, Space Mountain, Tower of Terror and even The Haunted Mansion because there were many fast, sudden changes or unsettling moments that would overwhelm my senses. I would always go on other rides, such as The Jungle Cruise, Pirates of the Caribbean, or Buzz Lightyear Astro Blasters, where I always knew what was about to happen. As for It’s a Small World, it not only felt like a safe haven for me, but the many creative scenes within the ride, along with all of the beautiful art and designs, inspired me and made me feel like I was 3 years old again.

Could this be called a guilty pleasure of mine? Am I really too old for this ride? I actually doubt this very much. I only consider something a guilty pleasure if it’s of poor quality and not deserving of any recognition as something positive. To me, It’s a Small World is a beautiful declaration by Disney that all people are equal, and if we were to open our eyes a bit more, the world would be a happier place. The same goes for anyone on the autism spectrum. Why can’t people open their eyes a bit and see that those with sensory issues or verbal communication difficulties are really not different from them?

“There’s so much that we share, that it’s time we’re aware, it’s a small world after all.”

Follow this journey on Growing Up Autistic.

Image source: Jonnyboyca [Public domain], via Wikimedia Commons

111
111
0
TOPICS
JOIN THE CONVERSATION

How The Turks Head Jugglers Helped Me as Someone on the Autism Spectrum

70
70
1

Growing up as someone on the autism spectrum, I never really fit in anywhere. Rather than joining others in team sports or hanging out at the mall, I’d be out looking for coins with my metal detector or studying sign language. You could definitely say I had some unique interests.

One day, my mom found a catalog for the night school program in my area. It listed some more common classes such as cooking or writing. But she noticed a specific class titled “Juggling? Of Course You Can!” I thought it was so different, so of course I had to try it!

I enjoyed the class immensely. I wasn’t great at juggling, but I really liked the positive attitude of the instructor, Randy. And when he told me that there was a free, local juggling group called The Turks Head Jugglers, I was thrilled!

I showed up to the group’s gym with my own juggling props: stacking cups (not the little ones, but sport-stacking ones). For the first time in my life, I felt like I belonged. Instead of the usual strange looks, I saw smiles. People were interested in what I was doing…and I was interested in the many different props that they were using. From juggling clubs to the diabolo (a kind of yo-yo), to tossing rings and more, there was just so much to try! And the best part was the fact that I could try them all.

Everyone was welcome to ask to try a new prop. Everyone was always so encouraging to each other. We all shared tips and tricks when we could. And newcomers were greeted with enthusiasm. Kids who came rarely got into trouble simply because they were so intrigued with everything they saw. The Turks Head Jugglers really made me feel accepted. I could be myself there.

And although I haven’t had much time for stacking cups or juggling anymore, I still try to head over to the gym for a visit once in a while. Each time I do, I find myself inspired by their encouragement. I feel welcome and accepted. For me, as someone on the autism spectrum, that is an awesome feeling.

If you or someone you know is looking for a group like this, there are lots of ways to find one. See if there is an adult evening school catalog for your area, and look at the classes they offer. You could look at a local college or school district and check out the list of clubs they have. You can also check out your local Department of Recreation. If you are looking specifically for a juggling group, check out this list of clubs by the International Jugglers’ Association. Above all, follow your interests, and don’t forget to have fun!

70
70
1
TOPICS
JOIN THE CONVERSATION

When It Feels Like My Child With Autism and I Have Arrived in a ‘New Land’

92
92
0

I follow a lot of blogs and have noticed they all differ on how they decide to show the world what their lives are like with autism. We all want to spread awareness for autism — I know that for a fact. We want inclusion for our children, we want needed services for our children and we want the same rights for your children and our children.

Still, my child with autism is very young, and I feel like we’ve just arrived in a “new land.”

Parents with older kids or adult children on the spectrum have definitely paved the way for “newbie” parents like myself. I wouldn’t know half of what I know if it weren’t for them. And what I didn’t learn from them, I learned from people with autism themselves.

I can still remember the emotions I felt after getting my child’s diagnosis. I also know what it’s like to want answers from professionals and not get them and to be sent on my way to this new land.

I just want to learn as much as I can, so I can set my child up to one day live alone in this land.

When I got here, I wanted to be accepted and taken in right away. But just like a new kid at school, not everyone accepts you. I get that. It’s OK, but I sure as hell will teach my child that if she wants acceptance in this land, she has to accept all others here, too.

In this land, there are differences of quirks, stims and, most of all, there are differences in opinions. Isn’t that what makes life in this land great?

Our life with autism might not be like your life with autism, but it’s not uncommon to find someone in our community who we can relate to. Whether your child is younger, older, a girl, a boy, or whether you’re a parent, a self-advocate or advocating for a loved one, we all live here!

In this land, your house may be bigger, and you may have more friends at your parties. And if that’s the case, good for you. You’ve done well for yourself.

I’m just sitting here unpacking our stuff, settling in and getting adjusted to our new life in our new land.

Others may also join us and move in here, too, and I’ll make sure to say “hi” and “welcome” as they come on in.

Follow this journey on Melissa’s Facebook page.

Lead photo source: Thinkstock Images

92
92
0
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.