I Feel Helpless at Times

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I feel so helpless at times. I wasn’t prepared for that I guess.

I am a strong mom. I know that for sure.

I am a firm believer that all things can be fixed. If we just work hard enough. Never give up. No situation is helpless.

That is what I preach.

My son has autism. Or he is autistic. Whichever one you want me to say.

I am also supposed to say it makes up who he is. He wouldn’t be him without autism.

I think I am supposed to say those sentences too. Although, I get both ways preached at me so it’s hard to keep up.

I just know that my son is Cooper. He is eight. He is the most beautiful child you will ever meet. And he is struggling right now.

He is made up of so many parts. Parts that cripple him.

Parts that are hard on him. And hard on our family.

And sometimes it’s just easier to point the finger at the ‘autism.’ To have a reason why it’s hard. To be able to say…’we are struggling because…’

But when you live it, or live with it I guess, you see the different parents that make it up.

The pieces.

The different disorders that are woven throughout his body. The anxiety. The behaviors. The OCD. The self injurious behavior. The ADHD. The Apraxia. The pain.

The parts that cripple him. That quite literally bring him to his knees. Drop him to the ground.

I see it daily.

Because most days, I drop to the ground with him. I am his mom. And I will always be there as his body is overtaken with pain, or anxiety, or fear, or anger.

I’m supposed to say it’s fine. He’s fine. It’s just autism. I’m supposed to only see the beauty. I am supposed to tell you that he is unique because of this disorder.

That it’s cool to be different. That it’s awesome to stand out.

But some days when I watch the parts cripple him, I don’t see the beauty.

When I am pushed to my limits to help him. When I’ve maxed out every doctor, every angle, every thing in my power, I don’t see the beauty.

Instead I feel helpless.

I want him to be able to communicate. I want the thoughts to come out. I want him to be able to say my ear hurts. Or I’m sad. Or that beeping sound is making me upset.

I want to help him with his anxiety.

I want to help him feel happy. I want him to be able to feel joy like other kids.

I want to help him with his hoarding. With his OCD. With the obsessions that control his life.

I want him to enjoy life. To not be afraid to look up from the screen and step out the front door.

I want to open his eyes to the beauty in this world. It’s waiting for him. We are waiting. We want to give him the world.

I want him to see the love that people have for him. That children and adults want to enter his world. They are waiting. Right next to him.

I want to help him tackle his fears. And see that they aren’t real. That there is no reason to be afraid of an apple. Or a bike. Or a blinking light.

I want to take away the pain and stress that cripple his body. That causes him to hit himself. And throw himself on the floor.

I want to fix this for him. Because that’s what moms do. We are supposed to know what to do. How to make it better.

Only I don’t. I don’t know where to start.

I don’t know how to pick one part, when all of them are screaming at me at the same time.

When I am at my lowest, sleep deprived, exhausted point, I want to say to him…’tell me what to do kid. Tell me how to help you. I’ll do it if you just tell me what to do.’

I know he won’t answer though.

I can’t help but feel like I’m wasting time. He’s eight and we still don’t have a handle on the anxiety. Or the OCD. Or the ADHD. How can that be? I’ve been trying to fix it for so long.

But the parts are always changing. Always evolving. Just when I get a handle on one, another one overtakes him.

Sometimes I want to scream at the parts…you win. You took control and you stole my son. And I don’t know how to get him back.

But I refuse to do that. I will keep fighting. I will keep moving forward. Trying to put this puzzle together.

Because that is what moms do.

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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 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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3 Comments

  1. L on January 13, 2019 at 5:08 pm

    I understand this all too well.



  2. Josephine on January 13, 2019 at 7:02 pm

    This is all so so painfully true. Especially the part about getting a handle on one challenge and, hey look, here is a whole different one you didn’t see coming!

    Also all the PC language surrounding autism bullshit is exhausting, dear God, we have to worry about THAT too?!



  3. Kim on January 14, 2019 at 7:08 am

    I’m right there with you. I feel your pain. The only thing that helped my son was growth and maturity. And Prozac, Tenex and abilify. And I’m sure you know this, but medical marijuana really helps too. When they’re in pain, they have behaviors. And the marijuana helps relieve the pain. ❤️