When I Hear What My Son With Autism Doesn't Say

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If we’re lucky, we have a few close friends, a few besties we can count on for the good times, the hard times and the times when life just takes a big, giant dump on you. Each one of those friends plays a different role. There’s the grab-a-bottle-of-wine friend who helps you connect with denial when you want to shut it all out and drown your problems with wine, cheese, chocolate and idle chit chat. There’s the friend who takes that bottle of wine and helps you put your big-girl pants on while dragging you kicking and screaming into your wine-free reality.

And then there’s the friend whose soul is so similar to your own, you’re convinced you were friends, if not sisters, in another lifetime. The friend you share a quiet connection with, a deep-rooted bond based on hearts and minds that are so alike. The friend who hears what you don’t say.

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This friend, who knows my brain and my heart almost as well as her own, bought me this sign for my birthday that reads, “Best friends hear what you don’t say…” I love it because it’s true and because it’s us. This friend and I have heard one another without ever saying a word.

As I stared at my sign that hangs on my most favorite place in the world, my beloved back porch, I couldn’t help but compare this unique, wordless bond I share with my friend to the quiet bond I share with my son, Ryan. Of course Ryan would never call me his “friend,” let alone his “best friend” because, well, I’m just Mom, but my connection with Ryan is equally unique, and just like my friend and I, sometimes I can hear Ryan without him saying a word.

Although Ryan is completely verbal, he doesn’t say much. There are no sitdowns where he shares his feelings with me. I get almost no information on how his day went, what’s happening in his life and how he feels about it. I understand this is typical behavior for many teens, and I understand hormones make Ryan’s silence seem even louder, but most teenagers have a bestie they can confide in. A friend who shows up, a friend who helps them forget, a friend who gets it, a friend who hears what they don’t say. Ryan does not. Autism makes finding that connection, that bond, that friend difficult. And even if he finds it, knowing what to do with it is even more difficult.

With Ryan, there’s also no, “Hey Mom, how are you? How was your day?” coming from his mouth. I know he cares about me and my day, but autism makes that social back-and-forth exchange difficult for him, so it’s easier not to ask. Not asking doesn’t equal not caring. As I sat swaying back and forth on my porch swing, recognizing the parallels between my friendship with my girlfriend and my relationship with my son, I couldn’t help but smile.

In that moment, I realized most of the time, even through the silence, I hear what Ryan doesn’t say.

When Ryan comes up and presses his forehead against my own, he’s saying, “Mom, I have something good to tell you, so please ask.” When he walks in the front door after school and goes straight to his room without putting his backpack in the foyer closet, taking off his shoes and coming to give me a hug, he’s saying, “There was a glitch in my day.” When Ryan pulls at his eyes and grabs at his face in an attempt to hold back his tears, he’s saying, “Mom, I’m hurting, I’m sad and I don’t know how to tell you.”

When he sniffs 50 times in 30 seconds, he’s saying, “I need some type of deep pressure, squeezy-tight hug because my sensory system is overloaded.” When Ryan’s hand flicks back and forth and back and forth until it is just a blur of skin, he’s saying, “I’m anxious” or “I’m excited.” When he fights back a smile and contorts his face in an anti-smile grimace, Ryan’s saying, “I’m proud, happy, excited, but I’m not sure how to react or share my joy.” If I “listen” closely, I hear what he doesn’t say.

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And although Ryan may not directly ask me about my day, when he catches me silently crying, he will snuggle close. Even though he doesn’t utter a word, I can feel his “I’m sorry you’re sad, Mom” in his knock-me-down hug. I can see Ryan’s compassion and his sympathy for my sorrow when a tear or two falls to match my own. I can hear his joy when he laughs with me even if he has no idea what I am laughing about. Yes, Ryan hears what I don’t say, too.

So just like with my bestie, I have that quiet, unspoken connection with Ryan, too. And I know he has that quiet connection with me. Ryan shares his life, his joy, his accomplishments and his heartache with me. I just have to see it, I have to feel it and I have to hear it, even when he says nothing at all.

As I relax on my back-porch swing, wine in hand listening to the crickets and the sound of Ryan scripting the latest Minecraft YouTuber coming from his bathroom window, I look at the sign and smile. “Best friends hear what you don’t say…” helps me to remember that although Ryan will never refer to me as his “best friend,” I will always hear him.

Even as my little boy slowly morphs into a full-fledged, silent, brooding teenager, in those moments where I worry he’s slipping away from me, if I listen closely, I can still hear what he doesn’t say. Ryan may not have a friend who tells him to “put on his big girl pants” (“Why would I wear girls’ clothing?”) and face what lies ahead, but if Ryan finds one friend who sees him, who feels him and who hears him when he doesn’t say a word, I believe they’ll both be happy, secure and comfortable in their silence.

In a world that’s busy, loud and full of noise, sometimes a best friend (or a mom) really can hear you without any words spoken, without any connection from your mouth to their ears. All anyone needs is a connection to your heart, and they’ll always be able to hear what you don’t say.

Follow this journey on The AWEnesty of Autism.

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The Animation Game That Could Help Kids With Autism Develop Social Skills

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A new animation program is making learning social skills easier and more fun for kids with autism.

Gary Jesch, a digital animator based in Carson City, Nevada, recently developed Invirtua Animation for Autism, a live animation system designed to help children with autism work through social anxiety and learn social interaction skills.

Also referred to as a “digital puppeteer,” Invirtua features animated 3-D characters controlled on a screen to demonstrate positive behaviors like facial expressions, eye contact and social interaction. Children with autism can interact with the avatars and learn from the behaviors they model in a fun, engaging way. They can also control the avatars to convey their own feelings.

“Therapy can often be frustrating and challenging. Depending on the child, it might be hard to hold their attention or lower their anxiety enough to make it effective,” Jesch told The Mighty. “We [thought] bringing this live animation technology — which really seems to appeal to kids — into therapies could help.”

The concept behind Invirtua is based on video modeling, a teaching method sometimes used in autism therapy where children visually learn behaviors or skills by watching them on a screen. A parent or therapist can control a chosen character on the Invirtua computer screen using a tablet and a pen in what is called the “control room.” The character — an animated fish, dinosaur, animal or a person — displays on a screen in another room, the “audience room.” The Invirtua program provides a webcam that can be placed on top of the screen in the audience room so whoever is in the “control room” can monitor the child in the “audience room.”

The person in the control room can make their character talk, and his or her voice comes through the speakers in the audience room. From the audience room, the child can see and hear the character doing whatever the person in the control room wants it to do — moving across the screen, expressing a range of emotions and making facial expressions.

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This is what the screen, controls and tablet look like in the control room. Copyright 2014 CHOPS & Assoc. Live Animation

For children who find it difficult to talk and make eye contact with others, socializing with a character on a screen can be a helpful step toward feeling comfortable interacting with people. The avatar removes the authority figure, like a teacher or a therapist, from the equation and allows the child to practice important communication skills in a lower-stress environment. Jesch, who’s worked in live animation for more than 20 years, noted that the children who participated in Invirtua’s pilot programs demonstrated lowered anxiety levels once they began working with the avatars. 

“Humans, without realizing it, can convey anxiety and stress. Kids pick up on that,” Jesch told The Mighty. “Avatars can make that all a lot easier. They aren’t intimidating; they’re silly and fun.”

In addition to helping children with autism develop social skills, Jesch said this technology could be useful for training airline personnel, police officers, teachers and other professionals to learn to better interact with people who have autism. He also plans to meet with children who have nonverbal autism and their parents to see how the technology could help them.

Check out some of the available avatars and watch the Invirtua program in action below:

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Copyright 2014 CHOPS & Assoc. Live Animation
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Copyright 2014 CHOPS & Assoc. Live Animation
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Copyright 2014 CHOPS & Assoc. Live Animation

The Invirtua Animation for Autism program is available through the Animation for Autism website.

To learn more about this program, visit the Invirtua website and contact Gary Jesch.

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When I Didn't Recognize the Woman Next to My Son With Autism

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Who is that woman with my son? She just stands there as my son, Philip, messes up the craft. At this table, the public library has a project in which a coffee filter is supposed to be glued to the top of a green rectangle of construction paper to become a flower on a stem. Philip is gluing it in the middle! Wait, is she helping him do it wrong? Why didn’t she point out how the other kids are doing it the right way? She acts as if this gymnasium is full of families who won’t notice.

Philip should now select a pastel cupcake liner and glue it inside the filter as the flower’s blossom. He touches the pink, blue and yellow cups, but puts the cap back on the glue stick. And that woman lets him.

Now he is moving to the other side of the table. He has discovered the librarian’s stash of black markers. And instead of telling him not to touch them, that woman is chatting with the librarian. Wait, she’s finally taking action. Maybe she’s going to yank the marker out of his hand.

She takes a photograph.

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From one table to the next, Philip refuses to complete the activities at this event as designed. That lady doesn’t correct him once. He takes stickers from one table to embellish his “not a flower.” He borrows the bright markers from another to decorate it even more. She does nothing to stop him.

I would have pushed Philip to stand on the right side of the table like all the other kids were doing. I would have fixed his projects, taking over so they more closely resembled the samples. I would have apologized for Philip’s errors.

I would have compared Philip to the other children and noticed how different he was. I would have been too self-consciousness to stay. “We’ve been here long enough,” I would have said in a falsely cheerful voice. My discomfort would have pushed me to skip the rest of the displays and leave.

I am the mother Philip was born to, but I no longer exist. I am the mother who worried about sideways glances and whispered comments from others about her son with autism. But I was slowly replaced by that woman sitting on the floor (on the floor!) as Philip eats frosting off a cupcake. She’s not thinking about what others think. She knows her son is just right as he is.

Philip doesn’t have the same mother. But now his mother is happier, and she hopes Philip is, too.

Follow this journey on That Cynking Feeling.

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The First Time Taking a Bath Didn't Lead to Sensory Overload

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Until the age of 2, everything seemed to be going fine. I was hitting most of my major milestones and was one of the more affectionate toddlers you’d ever meet. But that was when there was a setback. One of the major issues those with autism deal with is sensory overload. For me, this was the time when we saw a regress in my autism happening. I was nonverbal until I was 2 and a half, but the amount of texture issues I had to deal with were almost unbearable.

This brings me to one of my most complicated struggles I had as a toddler…

Water.

This is a huge issue for many in our disability community. Add autism to the mix and it can be too much. I didn’t like being in a shower or bathed whatsoever. Later, when I began to talk for the first time, I would scream, “Go away, rain! Go away, water!” My parents would use wet cloths to clean me as a shower nozzle or a tub full of water became an impossible solution. Tactile autism had become a major difficulty and for a while, it seemed like it would never get better.

As I was still very young, I really never embraced how much this may be impacting me at the time. Going from not being able to bathe to suddenly not being able to hug or embrace my loved ones was so difficult. I know it was heartbreaking not only to my parents, but to my entire family when they realized the kid who would come around during the holidays suddenly didn’t want to be touched by anyone he’d grown up with.

It wasn’t until later that the conversation changed.

A little after I turned 3, we were at a local pool for a birthday party. Like many times before, I wasn’t looking forward to the experience. My parents struggled to put my bathing suit on, and we were off. When the party started, all the kids were in the pool while I was on the outside looking in. There were also several shower nozzles around the pool. For whatever reason, seeing all the kids having fun running around the nozzles led to a trigger going off in my head.

Before I fully realized the danger that could’ve happen by doing what I was thinking, I ran under one of the shower nozzles and instead of flapping, twirling my hair, running away or doing any of my usual coping mechanisms, I just smiled and laughed with the other kids.

young boy playing outside in water

My parents were thrilled, and later that night was the first time they were able to bathe me in a bathtub for over a year. I wish I could tell you there was a miracle solution that made this happen, but there wasn’t. It just clicked, and for my family and me, that was enough.

I hope by sharing this emotional experience I can help spread awareness for the need for those with autism to get the best Early Intervention services possible to help with these overloads. For those out there who may have a similar difficulty with their children, please know I’m there for you when these issues arise. Being a part of a community is about being able to share our stories, especially when some of the hardest times take place.

Today, water doesn’t affect me at all, and I hope one day, if your kids are ever invited to a pool party in the future, they’ll be able to have as much fun as I did that day.

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To the Waitress at Steak ’n Shake Who Listened to My Son With Autism

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Dear Waitress at the Frankfort (Kentucky) Steak ‘n Shake Who Served Us Saturday Night:

As a waitress in a 24-hour sit-down fast-food restaurant, I’m sure you get a lot of odd requests — especially from harried parents dealing with children in a visually stimulating (black-and-white checkered decor), cold, audibly loud environment. But I have to tell you, you handled our table with grace and calmness that belied the busy dining room.

When we ordered a hotdog for our autistic 9-year-old son, Scott, and explained the mustard must be made in a squiggly line on top of the hotdog — much like one would see on any picture of any hotdog in any children’s book — you didn’t even bat an eye. You had no idea if he’d received a hotdog without mustard or with the mustard not in a squiggling line in such a loud, cold, visually stimulating environment, it would’ve likely caused a meltdown for which there may have been no immediate recovery. You just nodded, smiled, said you understood, and brought us a perfect hotdog. You made sure the milkshake had a cherry and brought him a salad as a side to his kids’ meal, even though that isn’t the norm.

You were a fantastic waitress and we had a meal with no issues. As the mother of a child diagnosed with “autism spectrum disorder manifested by issues in reading and auditory comprehension,  issues in interpersonal relationships, and issues in sensory processing with an above average raw intelligence,” I can assure you — many meals out aren’t handled so smoothly, and many waitresses and waiters truly don’t have any desire to cater to the odd requests of one small family.

When we encounter wait staff like you, we always make sure the tip is padded. I hope you were blessed by that.

We had to eat and run in a hurry. We had a meeting an hour away and only had 45 minutes to get there. We left and were halfway to our meeting when Scott realized he’d left his “Joy” toy on the table.

You have no way of knowing this, but the things that are special to Scott are obsessively special to him. I don’t use the term obsessively lightly.

The author's son, a young boy, holding toys.

Joy is the emotion “joy” from the recent movie, “Inside Out.” We watch the previews about 43,000 times a day. His wish list for his birthday this Friday is the entire set of action figure emotions from the movie. Right now, he only owns Joy and she goes everywhere with him  from bed to bath to table to bike, she’s in his hand or pocket.

There was no meltdown when he realized he’d left Joy. There was more like an “off” button. His entire body deflated, his face completely fell, and he had no emotion whatsoever. We told him we’d stop and purchase a new one. He emotionlessly said he didn’t want another one.

When we left the meeting at nearly 9 that night, we called your restaurant. The woman who answered the phone told us they’d found Joy and had kept her for us. The hour-long drive to your restaurant was probably the longest drive in Scott’s life.

When we took Scott into the restaurant to get Joy, we found out she was given a tour of the kitchen and rode in the pockets of many staff members so she could get as many experiences as possible before we returned to pick her up. When you came to talk to us, you said you had a feeling she was important to Scott, and you knew we’d come back for her.

I can’t come up with words to express my gratitude for the gentle care you gave our son and his lost toy Saturday night. It would’ve been easy to ignore the request for mustard, a salad and a cherry, and just to toss the piece of plastic in the garbage when the table was bussed. But you listened, you heard and you loved him even though you didn’t know him.

I don’t know if you have any idea of the obstacles he’s going to face in his lifetime. We don’t even know. We’re spending his childhood trying to prepare him and teach him coping skills for surviving and thriving in this dark and fallen world. When we receive little bits of light from people like you, it gives us hope for what the future holds.

Thank you for the joy you gave us.

Follow this family’s journey on bridgemanfamily.com.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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 a Stranger Helped Calm My Son During His Meltdown in the Hospital

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Shots are no fun for anyone whether you a disability or not. My son, Trenton, who has severe autism, always has to have shots when he gets sick. Unfortunately, he doesn’t like swallowing pills. On this particular day, when Trenton had to have a shot, we experienced something much different than we had before.

It’s always instant tears and a meltdown when he figures out what is going to happen. Nothing can really prepare me for it. Every time it’s the same old story; it takes two nurses and Mommy to hold him down while another nurse gives him the shot.

This time was no different. Trenton screamed his blood-curdling screams. The sweat on his body drenched his clothes in a matter of seconds. His body squirmed all over the place, and we tried our best to hold him down so the nurse could inject his body with the medicine he needed to get over his illness.

It took all of my strength to help hold him down. His tears and screams broke my heart. It’s not only physically hard but mentally hard as well. If only he would swallow a pill!

Finally, it was over. The nurse got the shot in his leg. We all let go of him, but that was just the beginning of his meltdown. He continued to scream and cry. Nothing I did could make him stop screaming and crying. His cries and screams could be heard all over the main floor of the hospital.

I frantically looked for something in my purse to help him stop screaming so we could walk out to our car. But, of course, I had nothing. This was the one time that I didn’t have anything in my purse for him in an emergency, and this qualified as an emergency.

Not only is Trenton drenched in sweat, I was, too. I was so aggravated at myself for not being prepared and was starting to worry if I would ever get him out of the hospital.

Then, out of nowhere, a kind woman walked up to us and handed him a sensory caterpillar toy. He instantly stopped screaming and started fidgeting with the toy.

I finally got him to walk out of the hospital quietly. He was so engaged in his new toy that he was as happy as a lark! I thanked the woman over and over. I found out she watched the whole situation and knew I needed help. She went to the gift store in the hospital and bought him a toy. I’m still grateful for this woman to this day. I fear what would have happened if she didn’t come to our rescue. It’s so nice to know there are people out there who will help others in time of need.

In my eyes, she was an angel to Trenton and me. I hope she knows her act of kindness will never be forgotten.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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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