I’m Letting the Guilt Hold me Back

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The days are long but full of so much joy. We spend every waking moment devoted to our kids and a lot of sleepless night when our brains won’t let us sleep.

We IEP, we advocate and we constantly search for services.

We clean up the same hoard piles 19 times a day, we do therapy and we handle meltdowns like a champ.

We get so busy just living with Autism that we forget to live. We forget to take care of ourselves.

The guilt that comes with taking time for ourselves is brutal. We kind of lose that spark in ourselves.

Recently my family had a huge awakening. My Dad had a heart attack and I was on a cruise already feeling tremendous guilt for being gone from my son.

I honestly had the thought that his heart attack was somehow my punishment for taking time away. How crazy is that?!

That’s what being on high alert 24/7 does to a person. You question everything and you place blame on yourself.

Long story short, I flew home from the cruise and jumped on another plane to be home with my family.

My son stayed home with my husband and they were just fine, they got some good bonding time.

I was able to spend almost a week in the hospital with them, they are my rock.

It was the scariest week of my life.

I just put myself in that bed and thought about all the things I hadn’t done yet. All the moments I’ve let slip by because I was too scared to leave my son.

I realized that week that I’m not living my life.

I’m not going out for dinner with a friend.

I’m not making the best use of my time when my husband is home.

I’m letting the guilt of parenting a child with Autism hold me back. It’s a guilt I can’t explain to anyone but I know my special needs parents get it.

I’ve learned that you have a small window to be you, maybe it’s just an hour here or there but find yourself in that hour.

It’s ok to take an afternoon to yourself if you have someone helping. It’s ok to be just you.

That person that existed before everything.

My mantra waking up now is who am I?

I am a fierce Mama Bear who loves deeply and would do anything for someone.

I am ME outside of being a Mom. I am his voice but I have to keep mine too.

I can’t take care of others if I’m not taking care of myself.

I have to let my hair down, I have to go walk under the stars, I have to reconnect with myself and I have to give myself the grace to do these things.

To anyone struggling to try to be everything to everyone, I urge you to make yourself a priority for at least an hour a week.

Go out, dance, scream, blast the music in the car, read a book….do something for yourself.

The guilt is still there but it starts to fade away when you realize you are doing this for your kid. You have to let off steam.

You need a break and you deserve one.

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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2 Comments

  1. Maureen on March 9, 2019 at 1:40 pm

    The one thing that I have learnt from following FCV, is the amount of guilt that all parents of children with autistism seem feel. It is a killer. You need time for yourselves to stay sane and to keep going. Especially for your children. Easy for me to say, I don’t have any children. But guilt sticks out like a sore thumb. This is not a critical observation. Believe it or not I do realize what you all have to go through. Much love to you all and try to take a little time for yourselves.?



  2. Jamie on March 10, 2019 at 10:09 pm

    My name is Jamie and I am a special education teacher. I currently teach in a self-contained classroom teaching students with emotional disabilities that present a lot of autism like behaviors. PLEASE keep advocating for your son. Keep IEPing :-). You’re a rockstar! Every child deserves a dedicated transparent, parent like you!!!