More Than Words Can Say

Evie 5

If you had asked me what communication meant five years ago, I would have answered without hesitation, “It’s conversation, talking and listening.”

Then my daughter came along and showed me how limited that perception is.

Evie is five and a half years old, and was diagnosed with Autism Spectrum Disorder three years ago.

She doesn’t talk, not the way most people do.

She does something called scripting, which for her means using words and phrases memorized from select shows, movies and songs to express herself.

She throws them out like breadcrumbs, a trail of clues giving insight into her thoughts, feelings, wants and needs.

You’ll only be able to follow that trail if you can think intuitively, step outside the box, and listen with your heart and not just your ears.

Evie and I had an exchange this week, our own version of a conversation that most people wouldn’t blink at, but it meant the world to me.

It wasn’t what was said that was special, it was the way she said it.

The way she looked at me.

The pitch of her voice.

The intensity of her expression.

No sentimental words were spoken, no ‘I love you’s’ exchanged, the words themselves were ordinary.

Mine, a reprimand I’d spoken a hundred times before; hers a scripted phrase, the line of a song.

It was Evie’s ability to connect, her willingness to join me for a moment fully and completely that made it so impactful.

She was being particularly rough in her sensory seeking just then, the room was a blur of limbs and long blonde hair as she jumped, leapt, and spun.

After narrowly avoiding a kick to the face, I got down to her level to get her attention, to coax her into slowing down.

“Evie, we need to have calm bodies, okay? Let’s slow down and be very gentle. Gentle legs, gentle hands.”

To my surprise, instead of darting away, she reached up to hold my face and looked right into my eyes.

She was trying to show me she understood, she was listening, she was aware.

“Gently down the stream. Gently down the stream,” she responded earnestly, decidedly.

Was she scripting a line from a song?

Yes.

Does it still count as conversation in my books?

Yes, a hundred times over.

Evie stopped to listen when I spoke to her, and she gave me her full attention. That is an amazing feat.

Joint attention isn’t easy for her.

She understood what I asked of her, and then she actually DID what I asked of her! She calmed her body.

This is a new thing for us.

Evie’s receptive language really came in around four years of age, but despite her understanding, she still struggles to process and follow directions.

Usually the message gets lost in translation before her brain can command her body to act.

But not this time.

What really got me, though, was the tone of her voice when she spoke.

It was in her natural voice, she wasn’t imitating a Dora character, she wasn’t acting out a scene.

She was reassuring me she would be more gentle in her own way.

She left her special world and paused in mine for a moment, even though slowing down to our speed is uncomfortable for her.

That’s ‘I love you’ in Evie language.

You see, Evie figures out our world by making connections to her own, a reality that’s familiar, predictable and exciting for her.

She might be here in body, but her spirit roams the rainforest with Dora The Explorer and Dora’s faithful friends.

Evie’s heart beats to the rhythm of music, she dances through time while  singing songs that paint pictures only she can see.

I think the key to communication is trying to see things from someone else’s point of view, it’s putting yourself in someone else’s shoes for a little while.

I spend a lot of time in Evie’s world.

I’ve done a lot of singing and dancing in a borrowed pair of Evie’s shoes.

I’ve come to know that place inside and out; Evie and I have created our own language there, a mix and match of  Spanish and English verbs held together with tight squeezes.

I know more about Dora than anyone ever should.

I know all the words to Evie’s favorite nursery rhymes and Dora songs.

I’ve accidentally accumulated a tiny understanding of Spanish over time, as well.

I know the episodes by title and season: my all time favorite is episode 20 season 5, Dora’s Big Birthday Celebration, FYI.

Evie can hum half a word in a certain key and I know what Dora episode it’s from and that Evie wants to watch it.

Evie is usually hesitant to give her whole self over to me. She’ll meet me halfway, she’ll toe the border but she rarely steps over.

That’s why conversations, exchanges, interactions like the one last week mean so much to me.

It’s not easy for her to be still and focused like that, to be present, to process for meaning, then search through her memory bank for words that might express what she’s thinking and feeling in a way someone else might understand.

She works hard to communicate every single minute, something most people don’t even realize they take for granted.

She does it for me, for her family, because she loves us and wants to be part of our lives, even if it means a lot of work on her part, even though it isn’t easy.

It’s just one of the many ways she tells me she loves me.

If you listen with more than your ears, “gently down the stream” can sound a whole lot like “I love you”.

And I love her, too, my Evie The Explorer, so much more than words can say.

Written by, Jill Kakoske

Jill Kakoske is wife, middle school teacher, lover of pets and Mom to one daughter, Evie, who is Autistic. She lives in small town Saskatchewan, Canada, and enjoys spending time reading, relaxing with friends and family and writing about her experiences being Evie‘s mom. You can find her on Instagram and Facebook under Evie The Explorer or check out her website www.evietheexplorer.com 

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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