How 'Inside Out' Gave Me a Glimpse Into the Mind of My Son With Autism

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Every summer, you can count on at least one trip to a dark, cold movie theater for a kid movie, even though we spend all winter long dying to be outside in the bright, hot sun. Last week was our trip. Twenty-seven dollars later, Ryan, Emma and I were nestled in our big, sticky (gross) theater seats with our popcorn and sodas along with hundreds of other little kids. As much as I sometimes loathe a kid’s movie, I was excited to see this one. It looked unique, different and fun. Little did I know, this movie, “Inside Out,” would not only entertain me, it would allow me an opportunity that I have waited years for: a glimpse from the outside in.

Ever since we heard the A-word (autism), I’ve thought so many times, “If I could just get inside his head to see what he’s feeling” to try and understand my son, Ryan, better. Just a quick peak inside that big brain of his to know exactly what’s going on in there.

The desire has burned even stronger this summer as puberty, and the pendulum of emotions that goes with all that hormonal upheaval, has led Ryan to spend countless hours alone in his bedroom seeming to find so little joy in the things he once loved. Not knowing what’s going on inside that hormone-fueled brain of Ryan’s has led this mother to lie awake at night for countless hours worrying.

Since Ryan has trouble expressing his emotions, unless he’s on the extreme end of joy or anger, it’s hard to know what he’s feeling. As his mom, it’s hard to know what to do and how to ensure he’s “happy.” And there it is. The word every mother lives by and lives for: “I just want him to be happy.” Sometimes it’s hard to know if he is, or what “happy” means for Ryan.

Ironically, after years of wondering what was going on inside Ryan’s head, it took Disney-Pixar approximately 102 minutes to show me that not only did I struggle to understand the emotions going on inside my beautiful boy’s mind, he might struggle to make sense of them, too. Thanks to “Inside Out,” Ryan finally got to “see” Joy, Sadness, Anger, Disgust and Fear and how all those emotions make you feel. Thanks to Disney-Pixar, these emotions were finally explained in a way Ryan understood, quite possibly for the first time. And this mom got to get a glimpse from the outside in and what I saw made me recognize just how hard it’s been for Ryan to understand all those emotions running around in his head.

As I sat surrounded by hundreds of children crunching popcorn, slurping soda and giggling at the antics of emotions running around inside the main character, Riley’s, head, I heard none of it. As the theater screen illuminated with Pixar’s brilliant colors and the occasional light of a cell phone breaking through the darkness, I saw none of that. What I heard instead was Ryan’s giggles, his tears and his sniffing as the emotions in Riley’s brain impacted the emotions in Ryan’s brain. What I saw was something beautiful, something I’d spent countless hours trying to see and something I paid multiple therapists to help Ryan find. In that darkened movie theatre, with the glow of the screen on his face, I saw recognition, understanding and that lightbulb moment when it all comes together.

The movie showed the struggle with emotions that goes on inside all of our heads, and how sometimes even though we know what we feel, we’re unable to share those feelings. Whether it’s Joy, Sadness, Anger, Fear or Disgust taking over the controls inside our head, sometimes it’s hard to let others know which emotion is running the show. 

“Inside Out” also showed Ryan that finding Joy can be difficult as we get older because the things that once gave us joy as kids might not anymore. Ryan has tried to tell me repeatedly he is “done with swimming” and that “swimming in no longer part of his life,” yet he can’t explain why. As I watched Riley’s childhood imaginary friend, Bing Bong, disappear into the rubble of childhood, I saw our swimming pool go with him. I have no doubt Ryan understood that when it comes to how he feels, and how his childhood Joy is replaced sometimes by Sadness, Anger, Fear and Disgust, that he’s not so different than other kids.

Like so many moms sitting in the theater that day, I recognized I’m not so different than most moms either. We all want our kids to be happy, and we want nothing more than to protect them from sadness. I learned from Pixar cartoon characters that all kids have to experience sadness from time to time to help them find joy. Like many kids, Ryan may not be able to express what he’s feeling and sometimes that’s because of the A-word, and sometimes it’s because understanding our emotions, autism or no autism, is just hard.

Of all the Disney moments I’ve shared with my kids over the past 17 years, last week was the most valuable moment of all. When Ryan’s lightbulb went on, so did mine. As I watched it all come together for him, it came together for me, too. As much as I want to be on the inside trying to understand how he feels and making sure he is happy, what matters most is that he understands, that he gets it, and that he knows it’s okay to feel Sadness, Anger, Fear and Disgust when Joy occasionally gets lost.

Regardless of who’s at the controls of Ryan’s emotions, he needs to be the one to figure it out on the inside. Even if he can’t say it, he’s the one who must feel it, understand it and process it. And even though sometimes it kills me to be on the outside, unable to look from the inside out, that is where I need to be, ready to help Ryan embrace whoever is at the controls and do what I can to help him find joy, in his time, in his way… not mine.

Follow this family’s journey on The AWEnesty of Autism.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. 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 “Share Your Story” page for more about our submission guidelines.

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How to Join the Autism Video Challenge

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If you could reach a million people with one message about autism, what would you say?

If you or a loved one is affected by autism, we want to hear your response to this question — in video form! Here ‘s a summary of our video on tips for filming your response:

  • When using a cellphone, hold it horizontally with two hands. Don’t hold it vertically or with one hand.

Hand Position

  • If using a video camera, be sure it is on a tripod or held by another person with both hands.

  • Try to answer the question in 5 – 15 seconds.

  • Use plenty of natural light. If inside, have your face towards the window. You don’t want the sun or a window behind you — it creates a silhouette and we won’t be able to see you!

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  • Record in a quiet place.

  • Speak clearly & concisely. Be sure your hand is not over the microphone. Play through the video before submitting to make sure you can hear yourself.

Please submit your video to video@themighty.com by Wed. Sept 9​. For parents of nonverbal children, you can help them share their message in whatever format works best. Please note: Every clip cannot be included in what is published. However, every response will be used internally, to help make our approach to autism coverage as informed & supportive as it can be.

 

 

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Teenage Stand-Up Comedian on the Autism Spectrum Has Us In Stitches

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Leo Lytel is a 16-year-old stand-up comedian.

Leo, who lives in Washington, D.C., was diagnosed with autism at age 2, Syracuse.com reported. His diagnosis was later redefined as Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).

Now, the star-on-the-rise, who has been performing comedy since he was 13, has made a splash during his first appearance on the NBC show “America’s Got Talent.” His comedy routine centers around being a self-proclaimed “awkward high school student.” He got the judges and the audience laughing and now he’s been voted through to the next round.

Check out Leo’s hilarious routine in the video below: 

For more on Leo’s story, visit his website.

 

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Why I Stopped Blaming Myself for the Genes I Passed on to My Children

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There are so many debates and heated arguments over what causes autism. I, for one, stay away from the politics of it all. Why? Because my daughter was born with autism.

My husband and I got married, and we planned our children. We would have two perfect children, and we would love them no matter what sex they were, whether they had 10 fingers and 10 toes or not, no matter what they wanted to be when they grew up, no matter who they loved… we would love them just the same. Because they are our children. We made them; they came from us made with love. Our two beautiful creations, two beautiful girls: Anna and Zoey.

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We have our perfect family, A through Z!

Anna is 4 years old. She’s funny, smart and sassy, and she just came out of the “threenager” stage. There are no “terrible twos,” trust me — having a “threenager” will end you if you’re not ready for it. Heed my warning!

Zoey, our baby, is 2 years old, and she has superpowers. She can climb using just about anything in the house with absolutely anything she can find (anything, seriously! I’ve seen her use a pineapple as a step stool to climb to the sink). She has amazing problem solving skills, like none I’ve ever seen. She sings beautifully and is so happy.

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Anna has severe allergies, debilitating eczema and anxiety. She sees specialists to help with her flare-ups. Like Anna, I had horrible allergies and was hospitalized many times as a child. I also have severe anxiety. Anna’s still perfect, and when I ask her how she’s doing, I usually get, “I’m beautiful, Mommy!” And I say, “Yes you are, my baby!”

Zoey, well, she’s also a lot like me. She has obsessive compulsive disorder, she’s sensitive to sounds, people and situations, and she often feels like the world is too much for her. You see, I have OCD, anxiety and panic disorder. Zoey’s diagnosed with nonverbal autism. She doesn’t tell me she’s perfect; she shows me how perfect she is every day.

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For so long, I blamed myself for the genes I passed on to my children. I cried over it, I grieved over it and I hurt because of it.

They are my children. They came from me, and I adore them. Eventually, I realized blaming myself would be wrong. My husband loves me for who I am, and we love these beautiful children we created out of love.

Our genes created two beautiful, happy and loving little girls, and we wouldn’t change them for anything. They are who they are because of us. They were born this way… perfect.

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Follow this journey on the Facebook page Life With Zoey.

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The 20 Things I've Learned (So Far) on My Autism Parenting Journey

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I barely remember the person I was before my son began to lead me on this journey. The lessons he’s taught me are infinite. I’m grateful for them.

There are no ribbons handed out. There are no ceremonies or hunks of parchment to hang on the wall. But after a decade of special needs parenting, I feel I’ve earned an advanced degree in what’s important in life. Some are large, some are silly, but here are the top 20 lessons I’ve learned (so far) on this autism parenting roller coaster.

1. You’re never as good as your best day or as bad as your worst.

2. Our biggest victories often follow short bursts of brutal tests of will.

3. Comparison is a vile, ugly monster.

4. My son is sneaky like a ninja and never far away.

5. It’s possible the people who know you best are thousands of miles away, and you’ve never met them.

6. I believe God has a sense of humor.

7. That plan you had don’t mean sh*@.

8. The sweetest sentence ever uttered: “Daddy, lay with me.”

9. Bacon, ketchup and a toasted hamburger bun is a perfectly acceptable meal at Chili’s.

10. If you get a server who approves this meal without judgement, tip him or her well.

11. Facebook can be your best friend or a bitter enemy.

12. You can’t do this alone. Ask for help.

13. Finding a babysitter you can trust enough to actually relax over dinner is like finding a gold brick.

14. Your kids are always listening. Trust me.

15. If he’s quiet, he’s either sleeping or pooping. And he never sleeps.

16. The human body can do amazing things on very little sleep.

17. When in doubt about what’s bothering him, start with sensory.

18. People are drawn toward positivity. But if you fake it, they know.

19. Puberty is a bit*@.

20. There is a bigger plan.

Father and son in a parking lot. Both are holding a toy.

A version of this post originally appeared on Bacon and Juice Boxes.

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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To the Special Needs Parents Who Wonder 'What If...'

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As parents, we spend so much time wondering “What if I had…?” when it comes to our children. For example, what if I had ordered more speech therapy for my child? What if I had doubled up on their play therapy hours? What if I had enrolled them in that school for children who have autism instead of public school? What if I had spent more time interacting with them instead of watching TV/reading/sleeping? What if I had taken them to a different doctor? What if I had seen it sooner?

You can spend the rest of your life asking “what if I had” questions and, believe me, you will never find the answers. It’s impossible to know, unless you figure out how to rewind time. (And if you do, please let me know.)

So instead, I recommend an alternative to asking “what if I had” questions. Try asking “what if I hadn’t.” Anyone who knows me and will tell you I’m typically a glass-half-empty type of person. So trust me, it’s difficult for me to follow this exercise, too. But after all, we parents work so hard for our kids every single day and will continue to do so for the rest of our lives. This goes double for single parents, and quadruple (or more) for parents with children on the autism spectrum (or other disabilities). So give yourself a break for five minutes a day and ask yourself, “What if I hadn’t?”

What if I hadn’t recognized that something was amiss with my child? What if I hadn’t started asking questions and doing research? What if I hadn’t had them evaluated? What if I hadn’t taken them to therapy last week? Or the week before that? What if I hadn’t read that article on that intervention that offered a breakthrough for my child?

Sometimes we get so focused on what still needs to be done that we forget what we’ve already done. Of course it’s easy to get discouraged when you compare certain aspects of your child’s development to a neurotypical child. But it’s counterproductive to compare even two neurotypical children. Instead, compare your child to your child one year ago. Or two years ago. Chances are you’ve seen great progress.

So instead of asking yourself, “What if I had…?” ask yourself, “What if I hadn’t…?” and give yourself a pat on the back. Your child smiles more because of you.

kari sherwood the mighty

A version of this post originally appeared on Mommy First, Rockstar Second.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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 “Share Your Story” page for more about our submission guidelines.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

 

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