Two women dressed as Mickey and Minnie Mouse holding a sign for Ellen Degeneres Show

To the Woman Who Helped Me During an 'Ellen' Taping Event

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I have been an advocate since I was officially diagnosed as being on the autism spectrum when I was 15. There have been many different reactions from people when I tell them. My closer friends and family have been extremely supportive and accommodating. A lot of strangers, however, simply responded with, “Oh, you seem to be doing pretty well,” and then move on.

When I first heard my favorite show, “The Ellen DeGeneres Show,” would be taping the show locally, I was beyond thrilled. Yet, I knew it would be a challenge for me. Personally, I struggle with some social skills as someone on the autism spectrum. It takes me longer to process what people say. I also have an incredibly difficult time in crowds, and I get physically and mentally worn out dealing with them for very long. I decided to try to attend the taping anyways, because I knew I would regret missing out on a possible dream come true.

I was running on mostly adrenaline by the time I arrived in the morning. They wouldn’t start filming until early evening. It was cold, and I was already starting to struggle. Then you joined the group of fans I was hanging out with. After you complimented my autism awareness hat, I mentioned that I’m on the spectrum. You completely understood my situation.

You stayed by my side for the entire day. When I was feeling exhausted and overwhelmed, you kept my spirits up with a positive attitude. “We’ve got this!” You reminded me. When we were challenged to find costumes, and I couldn’t keep up with the rest of the group, you slowed down to my pace, all while encouraging me to go on. You paired up with me to dress as a famous duo, and helped us get our Mickey and Minnie Mouse ears. When we were standing in the jam-packed crowd, you helped me to keep standing by literally giving me a shoulder to lean on. I began to flap my hands a bit, stimming to self-regulate, and once you knew I was OK, you helped by explaining it to the others in the crowd.

I am a huge fan of Ellen. And because of you, I was able to meet with her staff member, too. I was able to get help holding up my sign. I got as close to a dream come true as I could possibly get. Without you, that wouldn’t have happened.

Thank you, Carrie Navok, for taking me under your wing, and helping me to have one of the best days of my life.

Two women dressed as Mickey and Minnie Mouse holding a sign for Ellen Degeneres Show that says [your awesomeness doesn't fit this poster] with photos of Ellen on it
Erin and Carrie

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When I Realized My Anxiety Was Holding Back My Son's Independence

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This past Sunday night we returned from a one-week vacation to our favorite resort in Jamaica. The resort has several pools and giant water slides.

Two years ago, my son, Dominic, and I almost drowned at the foot of the slides. We wanted to greet my daughter, Lauren, as she came down. We had not realized how deep it was. The lifeguard had to jump in and pull us to the surface. It was scary.

That incident was the number one reason I enrolled Dominic in swimming lessons shortly after we returned home. Last Friday (the day before we left), Dominic and I headed over to watch Lauren come down the slides. She had asked several times throughout the week if Dominic could go down with her. Each time I said no. I hadn’t thought of asking Dominic if this was something he wanted to do until we watched Lauren. To my surprise, he said yes.

I had a decision to make. Do I let my anxiety hold him back or do I let him try?  Lauren promised she would be with him the whole time. The lifeguard was also sitting within a foot of the bottom of the slides, so there was not a chance he would drown. I let him go.

He came down the slide with no problems at all. When they came over to see me, Lauren asked him if he wanted to go again. He said yes. They went down a few more times. Even now, with Dominic turning 13 in about four months, I feel guilty for not giving him more independence. Trying is a part of learning, right? I think it’s my inner “mamma bear” instincts of wanting to protect my “cubs.”  As Dominic continues to mature and become more independent, I need to loosen the restrictions I don’t mean to place on him.

I have already taught him what to say to me when I bug him too much. He says, “please just leave me alone.” I’m glad he can recognize those feelings. My relationship with Dominic is starting to change and evolve. I need to change with it, right?

Editor’s note: This story has been published with permission from the author’s son.

Follow this journey on Bountiful Plate.

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Chuck E. Cheese's Offers Sensory-Friendly Sundays Throughout U.S. and Canada

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Five months after partnering with the Center for Autism and Related Disorders (CARD) to launch a sensory-friendly event at its fun zone in Attleboro, Massachusetts, Chuck E. Cheese’s is bringing its “Sensory-Friendly Sunday” program to 355 locations throughout the U.S. and Canada.

After launching its pilot program, Chuck E. Cheese’s expanded the event to an additional 54 locations along the Northeast. After a successful three-month run, the company announced it will expand the program even further starting World Autism Day, Sunday, April 2.

“Our tagline is where a kid can be a kid, and we want to ensure we extend this ideal to kids who otherwise may not be able to enjoy Chuck E. Cheese’s due to the sensory overload,” Ami Anderson, senior director of advertising and media at CEC Entertainment, said in a press release. “We’re excited to be able to offer this program nationally beginning next month, with an exceptional leader in the autism field like CARD.”

The event is held the first Sunday of every month, from 9 a.m. to 11 a.m. – two hours before the restaurant opens to the public. For that time, lights will be dimmed, crowds smaller, music and performances will be either quiet or cancelled and appearances from costumed characters will be limited.

“I bring my own kids to our sensory days, and it gives not only our kids a chance to play in a calm, sensory-friendly and understanding environment, but also us parents time with our kids and like-minded, understanding folks,” Stephanie Debarber, an assistant manager at Chuck E. Cheese’s, who independently launched the company’s first sensory-sensitive event in Glen Burnie, Maryland, told The Mighty. “All of the cast members we schedule for our events are understanding and want to be there. There is no better feeling as a manager than being there with parents and kids who are happy and genuinely want to be there with each other.”

To see which locations are participating, visit Chuck E. Cheese’s website.  

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How Audiobooks and Music Help Me Quiet the Thoughts in My Brain

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I don’t hear voices in my head, but I do hear my voice, my brain. My brain is never quiet. Never.

Most of the time I keep a constant monologue, a constant commentary on what is happening: What should I do? Is it time to eat? What did that person mean when they said that thing the other day? I also have interjections like, how can the universe be infinite anyway? It’s hard to focus on everyday things, like for example cooking, when your brain is constantly engaged. Should I put the water on first, chop the vegetables or did I do something wrong at the grocery store?

Sometimes, I can get a song stuck in my head, and I’m not sure it’s the same thing neurotypical people experience. Imagine an old LP record with a scratch on it, so you get one sentence or snippet of the lyrics over and over, with the melody hopping from the end of the section to the beginning, and you can’t get out of that same loop. Now imagine this is happening with the volume up so it’s hard to concentrate and hear your thoughts. It’s quite annoying. It takes great concentration to block that out.

And sometimes I feel as if my brain decides to drag things up that make me feel bad, put myself down or concentrate on the bad stuff in life. It especially likes to do this when it’s time to sleep.

This happened a lot when I was little. I had a list of embarrassing or sad moments I went through over and over again. I was too young to understand these things were not really embarrassing or even my fault, and nothing to feel bad about at all.

A positive thing about the way my brain works, is I can focus on a project I’m working on and solve all the difficulties or make them better. My brain likes to do this at night, too. Thanks brain.

Sometimes I have to give up on sleep, get up, make a cup of tea and start taking notes.

I’ve always thought of this as, “the way things are,” but I’ve found solutions to help quiet my mind.

I usually wear headphones and listen to an audiobook or music, but I’ve noticed it helps to just put the headphones on (because sometimes I forget to start the book or music). It took some time to find a pair of headphones I could wear for several hours a day without hurting, and I must say for me, Bose is superior in both comfort and sound. If you can afford a pair of active noise-canceling headphones, they are heaven.

I first tried them on in a busy electronics store. I stood facing the wall with the display, I put them on, flicked the switch, and the whole store seemed to disappear. I stood there with my eyes closed and enjoyed the silence. Yes, I got silence! I didn’t even try them for music. Let’s just say I got a pair.

At night I wear a pair of Sleepphones; it’s a headband of soft fleece with super thin speakers inside so you can comfortably rest your ear on the pillow. I do recommend the cordless ones. I like falling asleep while listening to a book. I wear these so my husband doesn’t have to hear snippets of a book every night.

I don’t always use my headphones because sometimes I need the monologue from my brain. It helps me be in sync with what I’m doing and it helps me work out problems and how to go about stuff. Sometimes I need to be “one with my head.” Then, when I’m finished with a task and need to quiet my brain, it is back on to books on tape.

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When My Nonverbal Son Pulled Me Toward a Group of Kids for the First Time

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My son is autistic. He is also nonverbal. He struggles with social skills, but he does not lack emotions.

There is a difference.

When someone cannot talk, it’s easy to assume he has no feelings either. Not being able to express is not the same as not being able to sense.

My son has often been a victim of this assumption. I’ve been a culprit.

Every once in awhile I catch myself discussing my son with someone, in his presence, as if he is a non-entity in the room. “He cannot talk, so he does not have an opinion.” That’s what we tend to incorrectly believe. A seemingly insignificant incident helped shatter this myth, yet again.

It was a routine drop-off at his bus stop in the morning when something happened that changed how I look at my son. The weather was pleasant after a cold spell, and everyone wanted to feel the sun and the warmth. So, unlike a bleak winter day, today there were a bunch of kids playing around, having fun. I did not really think much about it. After all they were just little children, none whom my son would be interested in playing with. But then, I saw something different happen. I noticed my son watch them with longing and delight. I had not seen that interest in his eyes before. He could not tell me, but I felt like he wanted to play with them.

“Why isn’t the bus here yet?” I thought to myself. I had read stories about how kids reject a “different “ kid. I was not ready for a heartbreak this early in the morning on such a beautiful day. However, seeing my son’s excitement, I asked if he wanted to join them and he shrieked a huge yes. I was still apprehensive. He wouldn’t be able to tell them how much he wanted to be a part of that group right now. I thought this was a perfect recipe for disappointment.

Still, I walked him to the kids, stopped a few of them, prompted my son to say “hi!” and then requested if they would let him play. They shrugged the way only kids can while still looking cute and then resumed what they were doing. I left my son there and moved away, hoping he would know what to do next. He stood there, watching the kids play all around him but not with him.

Then something interesting happened. He came to me, grabbed my hand, pulled me towards the kids and said “Mumma, come.” Apparently he had not given up on people. He just needed me by his side to help him, guide him and be his friend. We both walked back to noisy group and mingled in. We didn’t fit in, but we didn’t give up.

My son struggles socially, but as I stood there in that bus stop, I wondered who was more socially awkward. As I watched all this unfold in front of me, I was filled with hope. In that brief moment my son and I shared a promise of a lifetime. Him being nonverbal might affect how others perceive and treat him but I understand him. My son may not talk, but he has feelings, and I will do everything in my power to make sure they are acknowledged just as much as anyone else’s.

The world is not going to change with just marches, ribbons and bumper stickers. It’s going to change with a conversation — a conversation about inclusion and respect that needs to happen in every home on this planet. Unless we learn to see beyond the obvious, we will never be able to see the beautiful world that lies in the eyes of people who have a heart but no words yet.

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When People Say 'I Love Someone With Autism to the Moon And Back'

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A few years ago I saw the quote, “I Love Someone With Autism to the Moon and Back” for the first time. This quote has resonated with me because of the countless families members and educators I’ve met who love someone on the spectrum. The amount of passion they have for their loved ones to succeed and progress resonates with “to the moon and back” expression. I think it’s a beautiful saying.

I knew no other autism families when I was a young child on the autism spectrum. Looking back at my life through the videos and photos my parents took interacting with me, I know they certainly lived this quote. As a speaker and disability advocate, I know more and more families who feel the same.

So, for those who love someone with autism to the moon and back, I hope you realize the impact you have on our community. Whenever I hear someone share this quote during a presentation I feel it’s authentic. Whenever someone shares it on social media I often see it’s one of the most shared expressions in our autism community.

Thank you to all those families who love unconditionally. You make the world a better place for our autism community.

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