I Used to Google Nonverbal

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I used to google. A lot.

Late at night typically. Always on my phone so Jamie couldn’t see my search history.

I’d google flapping. I’d google ‘my toddler doesn’t sleep. ‘My toddler has no words.’

I’d google ‘my toddler doesn’t eat any food.’ ‘My toddler has no imaginative play.’

I’d google all the sentences that ran through my head on a constant stream. The sentences I had never said out loud.

I’d google nonverbal at age two. Nonverbal at age three. And then eventually nonverbal at age four and five.

I would frantically search the results. Skimming them for something I’d actually want to read. I was looking for stories of kids that didn’t talk, or eat, or sleep and didn’t have autism.

Those were hard to find. But if I really searched. If I really dug deep. I could find them.

I’d read blogs about kids that were nonverbal.

I’d read success stories. Late bloomers. Kids that miraculously started talking at age three and four.

I’d read about therapies. Miracle treatments and hope.

I’d read success stories.

Sometimes, I’d let myself read about the signs of autism. I’d feel guilty. I’d feel sad. I was reading about my son.

I stopped googling when Cooper turned five.

I could not type the words in the search bar anymore.

Nonverbal at age six.

It was too hard. I didn’t want to know what I’d find. Part of me worried that I had the only nonverbal six year old.

Part of me was scared to see what it looked like.

Part of me wanted to pretend he wasn’t actually six. That we still had lots of time. That this would be fine.

By age six, I found the success stories harder to swallow than the reality.

‘Nonverbal boy starts talking at age 8.’

‘Nonverbal boy starts talking at age 10. Becomes a doctor.’

Those stories killed me. The one in a million stories.

There are so many parts of this mystery diagnosis that I’ve come to accept. I’ve grown so much since Cooper was diagnosed.

I’ve settled into autism. My son is funny, loud, silly and confusing. He challenges me daily. He has shown me the true meaning of love. Most days, I think I am the lucky one.

Some days are harder than most.

We have a birthday right around the corner.

December 6th.

His birthday is a very hard time for me. Another year gone by.

And I find myself at a place I never knew was possible.

 

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Hanging with these two monsters while Sawyer goes to hockey. #mywingmen #boymom #autism

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A new search term I could google.

Nonverbal at age eight.

How can that be?

Some days I still don’t believe it. He is eight. And has no words. No actual speech sounds.

He’s no where closer to speaking than when he was two.

The only difference is that at age two I still believed it would happen. That it could happen. That some day, we would look back on all of this and smile. We’d laugh about the hard days.

We’d be the story that people told. The neighbor’s kid’s son who started talking at age seven. The one who didn’t say a word and then one day just started talking.

I thought my son would be the story of hope.

If you read Cooper’s speech paperwork you’ll see that his language is at a six month level.

That kills me.

Nonverbal at age eight. The sentence that I can barely say out loud.

A reality I never in my wildest dreams thought was possible.

I’ve never heard mom or I love you. We’ve never had a conversation. He’s never told me a joke.

There are parts I won’t get over. I want you to know that. I’m strong enough to admit that.

I’m tough as nails. I’m invincible at times.

And while I’ve settled into almost all of it…fully accepting nonverbal isn’t one of them.

I’m angry. I’m heartbroken. I feel slighted. I feel robbed.

I feel lost and confused.

I feel myself walking a fine line of still hoping. Praying that it may happen. And accepting that I may live an entire life and never hear my son say ‘mom.’

I don’t know how to fully accept that. Not yet anyways.

I guess maybe that’s the reality. Figuring it all out. Being okay with it. And making it through.

Written by, Finding Cooper’s Voice

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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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3 Comments

  1. Jess on November 11, 2018 at 7:43 pm

    My daughter is going to be 7 at the end of November. She is nonverbal and has autism. She was born at 25 weeks and is a true miracle but I struggle everyday with the thought that she may never speak. It makes me so sad. I feel your pain and I completely understand how you feel. You are not alone. Your posts give me strength and help me get through the hard times. Thank you.



  2. Lydia on November 11, 2018 at 10:12 pm

    This sounds just like our story. I can relate to the pain and the hopelessness. My son will be 11 this coming March and is also completely nonverbal. I’ve waited for over 10 long years to hear him call me “Mom”, but that hasn’t happened. I too hoped and prayed that he would have some miracle breakthrough, but I now have unwillingly accepted that he will probably always be nonverbal. It is heartbreaking for us and please know that we share your pain. Thank you for sharing your Cooper with us. He has the most contagious smile ever!



  3. Ida on November 18, 2018 at 11:02 pm

    How about potty training ideas?