The Truth About Autism

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Autism.

You may have heard that word a few times before; although it may not mean that much to you.

It probably doesn’t stop you in your tracks when you hear it.

It probably doesn’t make your heart drop to your stomach when someone is talking about it.

It probably doesn’t relate to you in anyway at all.

But to me, it is such a heavy word. It’s a word I will have to carry around on my shoulders for the rest of my life.

You see, I have two little boys with autism.

But don’t for a second think that it is the only word used to describe them, they are so much more than a diagnosis.

They are loving.

They are sweet.

They are intelligent.

They are amazing.

They are the absolute best thing that has ever happened to me.

But they are also the hardest. And until you have actually lived with autism, I don’t expect you to understand. But I am going to try to explain it to you anyway.

Most parents with typical children take a lot of things for granted. But it’s not their fault, they honestly don’t know any better. They don’t have the same struggles that parents like me have to face every single day.

You see, unlike most parents, I will never get to watch my children play a sport, or graduate high school, or college, or see them get their first job.

I will never get to sit in the front row of their wedding sobbing as I watch them marry the love of their life.

I will never have grand kids to spoil.

I am going to be missing out on a lot of major milestones that most parents will get to experience with their children.

And to say that I am jealous is an understatement. I’m not ashamed to admit it. I am extremely jealous.

I find myself scrolling through Facebook, reading all of my friends posts about all of the exciting new things their kids learned at school that day, or going through all the pictures of sporting events and award ceremonies, and plays.

It’s just not fair.

The trick-or-treating, going to see Santa Claus, throwing birthday parties, family vacations- it all stings.

Seeing how excited other peoples children are about Halloween or Christmas.

Hearing them talk about what costume they have, or what cool new toy they added to their Christmas list to Santa. My children have never cared about any of that.

So many of my days have been full of screams, and meltdowns, and throwing things, and self injuring.

I am overwhelmed. They are overwhelmed.

I hate that my children have to struggle so much every single day.

I wish more than anything they could express to me what they need or want.

I am tired of guessing. I am tired of not knowing what is bothering them or if they are hurting.

I’m just tired.

But I think the hardest part of all is that I probably will never get to hear my boys say the words “I love you.”

Sure, I know they love me. I can see it in the way their eyes light up when I walk into the room, or in the way they will randomly stop what they are doing to look at me with the biggest smiles on their faces.

But there is something about knowing I’ll never actually get to hear them say it to me that completely breaks my heart.

I didn’t tell you all of this so that you will feels sorry for me. That is not my intentions at all. I am telling you to bring awareness to the struggles parents like me will have to face everyday for the rest of our lives.

Autism awareness isn’t just colorful puzzle pieces. It’s showing the truth. No matter how hard it may be to accept.

Autism is forever. There is no cure, no quick fix.

It’s endless doctors appointments, therapy sessions, and medications.

It’s flapping, stimming, rocking, and rolling.

It’s meltdowns and self injuring.

It’s hard. I won’t lie to you.

But it is also the most rewarding job I will ever have.

My boys will always be innocent. They will always love me. I will never have to worry about them breaking my heart.

They will never move half way across the country, or even across the street.

They are mine forever.

And that is my favorite part.

Written by, Kayla Stanley

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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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