What I Realized When My Daughter Said, 'I Love Autism!'

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I have always said, there is something about Felicity. Not sure what it is. Perhaps she’s an old soul who when arriving on this planet fussed to no end because she wasn’t content in just being a baby. Perhaps she is pure. Felicity always surprises me…sometimes in ways that try my patience.

Last week Felicity turned 8. I have shared how Felicity started out struggling. I shared how neighbors would check to see if I was OK because her colic had her crying from dawn to dusk and I shared how she’s truly the meaning of her name, happiness.

Today, as I rushed around trying to get dinner cooked, homework complete and make sure we had all we needed for the next day, she appeared. She stood before me and asked to create. You see, Felicity also creates… a lot… and often leaves her creations (and creative methods all over the house for the little ones to get and use in various places such as couches), so we have a rule: you must ask to create. And she did. I agreed and looked up as she ran to grab the markers, paint, pens and pencils and prop herself up at the table. I was chatting with my good friend and glanced over to see, “I love Austin.”

“You love Austin? Who is Austin,” I wondered when she piped up and said, “No! I love autism.”

“You love autism?” I asked, and instantly I smiled. Truth is, this kid pointed out what I already knew. I love autism too. It has its challenges, but I love it for so many reasons.

little girl holding sign that says i love autism

I love that I have become more patient.

I love that I have become more understanding.

I love that autism has made my children more aware of others with disability.

I love that autism is finally showing me what I am supposed to do with my life and why I believe God chose to have me here on earth.

I love that autism teaches me to relish in the moments. I love that because of autism, I live, eat and breathe milestones, and those simple sentences you never thought twice about become gems you share with friends.

I love that autism has made my marriage better.

I love that autism has taught me to allow myself to be snuggled and cuddled the way a mom should be.

I won’t pretend we don’t have our challenges. I won’t pretend I don’t question myself as a wife, mother and friend, but I will celebrate our struggles when I am reminded of all the good autism brings.

As I said today to someone: I never planned this journey, but the girl who is guiding me along the way is my hero because she’s made me the person I was intended to be.

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PBS KIDS to Air Autism-Related Episodes of Popular Children's Shows

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To help promote autism awareness, acceptance and understanding, PBS KIDS will air autism-themed episodes of several popular children’s shows throughout April, Autism Awareness Month.

PBS KIDS’ autism-themed programing starts April 10 with the “Meet Julia” episode of “Sesame Street,” which introduces the show’s newest character, Julia, a muppet on the autism spectrum. The channel will also be featuring autism-related episodes of “Dinosaur Train” and “Arthur.”

“Our PBS KIDS Autism Awareness Month programming is important as we reflect the diversity of our audience through our characters. The more kids can relate to these characters, the more they will learn from them,” Linda Simensky, vice president of children’s programming at PBS, told The Mighty. “We feel that including special needs and disabilities into that definition of diversity is vital, and we want to set an example for kids so that they are comfortable interacting and communicating with those who may be a little different from them.”

In addition to autism-friendly programming, PBS also offers a website for parents featuring educational resources and a website for teachers with materials and activities for kids on the spectrum.

The full schedule is as follows:

Sesame Street 

“Meet Julia”

Sesame Street residents meet Julia, Sesame Street’s newest addition, a red-haired, green-eyed muppet on the autism spectrum.

Dinosaur Train 

“Junior Conductor’s Academy (Part I)” – April 10

The kids are all excited! Why? Because they’re off to Junior Conductor’s Academy in Laramidia to try to become Junior Conductors First Class. Buddy has a feeling he’s going to be a star in class, until he meets Dennis Deinocheirus – a kid who knows even more dinosaur facts than he does! Can Buddy get over his disappointment that he’s not the smartest kid in class, and make friends with Dennis (who seems like he’s having trouble making friends on his own)?

“Junior Conductor’s Academy (Part II)” – April 10

Now that Buddy and Dennis are friends, they have to work together (with the other kids) in order to pass a series of tests. If they succeed, they’ll receive their Junior Conductors First Class pins! But standing in the way of their success is the most challenging instructor of all… Thurston Troodon!

Arthur

“When Carl Met George/D.W. Swims with the Fishes” – April 10

George is excited about spending time with his new friend, Carl, who seems to know all kind of cool facts about trains and about… well lots of things! Then George learns that Carl has Asperger’s Syndrome, which makes Carl see the world differently than most people. Can George and Carl remain good friends – and perhaps even learn from each other?

“Pets and Pests/Go Fly a Kite” – April 11

There’s a mouse loose in the Read home! And D.W. wants it gone… NOW! When traps fail, Arthur enlists the help of an expert mouse catcher…a fearless hunter who laughs in the face of danger: Nemo??  / While playing in the park, Binky, Muffy, and Ladonna stumble upon an abandoned kite. After failing to find the owner, the trio decides to take joint custody of the toy. But sharing it is easier said than done…

“Carl’s Concerto/Too Much of a Good Thing” – April 12

Carl has agreed to play the accordion for George’s puppet show. But his routines are getting in the way of rehearsals. Now George must decide: keep Carl and risk the show, or replace Carl and risk his friendship? / Buster enlists Binky’s help to keep him from gorging on delicious Tuvaluna cookies. Will Buster’s self-control hold…or crumble?

“He Said, He Said/Bunny Trouble” – April 13

A special episode of Bionic Bunny is interrupted, and Arthur, Buster, and George try to remember what comes next. But Carl is the only one who can straighten out the story. / D.W. is excited to be taking care of the class bunny, Larry. But when Larry is feeling adventurous and wanders off, it’s up to Ladonna the “Bunny Whisperer” to help get him back.

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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 logo

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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