What I Don’t Say

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Autism is complex with many different angles and moving parts…as are those on the spectrum. 

All uniquely beautiful in their own way. 

My husband and I had a tough conversation today about all the parts we do not tell our friends and family…..the hard stuff.

It is not my story to tell. 

It is his. My son’s. 

Sometimes I do have to share. To his teachers, to family and sometimes to friends. 

I never want to share that stuff. 

The raging meltdowns. 

Sometimes over something as small as a toy that will not line up right or stand up on its own. 

He hurts himself. He scratches his face. He bites himself. 

He sometimes goes after me. He pinches and kicks. It breaks my heart. 

He screams this ungodly scream. Over and over again. It is like nothing you have ever heard in your life. 

It is the single most awful thing to witness until it passes. All you can do is try to keep him safe. 

It is heartbreaking. 

I never want people to see that side. 

I am always afraid someone will look at him like a monster if they witnessed a breakdown. 

He deserves for you to see the happy because that is who he truly is. 

Sometimes his little body just will not let him and it is my job to protect him. 

Sometimes that means leaving an event before it happens or sometimes cancelling last minute because I can sense it. 

I have heard you call me frazzled or stressed. 

It is true. I am trying to make sure that he has the best time and is comfortable. 

I do not tell you that even though my child can not have a conversation….he talks nonstop. 

There is never a quiet moment unless we are asleep. 

Verbal stimming. 

It is constant. Repeating words, sentences and sounds. 

It can be maddening at times. 

I tried to talk to someone about it recently and they said….well at least he talks. (Insert mad emoji here) 

Every non-verbal mom has thought that I am sure. I know I did at one point. 

He still can not tell me how his day was or even really respond to questions. 

What I do not tell you is that this is really hard. 

All day every day. 

It hurts your soul because all you want is for you kid to be happy and sometimes his body just will not let him. 

It can break you if you let it. 

I have seen a lot of fights on social media lately about autism parents wanting their kids to be perfect.

I do not have to want. He already is perfect. 

I just want him to have peace. I want him to have a whole day where his emotions are under control and he can enjoy himself. 

So no, I do not tell you everything.

Instead, I research and attend conferences. I get involved with his therapy and honestly miss a lot of the “world you live in” but that is ok.

I am not missing out on anything. 

I have everything I need right here. 

A special child who needs me, needs a strong mama. 

One that needs you to see him for all that he is not just what his behavior shows you. 

Sorry I do not tell you everything. It is not personal. 

When he is ready, he will share his story with the world. 

I will be front row. Cheering on that little boy. Who has been perfect all along. 

Be Kind. 

Written by, An Anonymous Mother

Finding Cooper’s Voice accepts guest posts from writers who choose to stay anonymous. I do this because so many of these topics are hard to talk about. The writers are worried about being shamed. They are worried about being judged. As a writer and mother I totally get it. But I also understand the importance of telling our stories. And this will ALWAYS be a safe place to do it.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter

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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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