I’ve Been a Primary Caregiver for 30 Years. Here is What I Want you to Know:

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Hi, my name is Kelly and I am the mother to an amazing young man named Steven. He was diagnosed with autism at age 2 and later apraxia. He recently turned 30 and is a dynamic, smart, interesting, funny young man. We share our story on Instagram at Growing Up Steven.

Being a primary caregiver for the last 30 years has rewarded me with a few things:

A panic disorder, depression, anxiety, excessive worry, marriage struggles, and at times, not the mom my kids deserved. I want you to learn from my mistakes.

First, let me say not focusing on my own self care has nothing to do with my son Steven and everything to do with me. Steven never told me I could not go to the movies, out to dinner with friends, on a date with my husband, to the spa, etc…

As a matter of fact, I have no doubt that if he could have communicated with me when he was younger, he would have told me to do something for myself and have a nice time while doing it!

I am the one who chose to put my mental health, physical health, and my marriage on the back burner. Me.

Instead, I thought my children should be my only priority. There were days when my kids were younger when I did not even sit down for 5 minutes.

Steven’s progress and the well-being of my other two children were my main focus. No one could help them but me (that is the biggest lie of all that we tell ourselves). While putting all of my energy into my children and living and breathing Steven’s Autism, I never one time thought ahead to my marriage or my mental and physical health.

Years later, when I started having both physical and emotional issues, I did not connect that lack of self care could have been the issue. I now know that is exactly what was going on.

Thankfully, I finally woke up to the fact that I was putting myself last. And the truth is, you can prioritize your children AND your own self care.

I now make my physical and mental health a priority. And as a result I am doing so much better with that part of my life.

The bad part is the damage was already done. You can not possibly be all things to all people if you never take a break!

My husband and I still struggle making our marriage a priority. We never did it so it is foreign to us. We still continue to work on that as well.

If I could go back I would do things so differently. I would make time for myself and my marriage. I know for a fact those changes would have made me a better mother.

Our children need and deserve us to always be at our best. We can not do that if we don’t make taking care of ourselves a priority.

Autism alone did not cause problems for me. However, it is an overwhelming responsibility to raise an autistic child and meet all of their needs.

PLEASE be mindful that you matter too.

Written by, Kelly of Growing Up Steven

My name is Kelly. I am a wife and the mother of 3 wonderful children. I enjoy spending time with my family and I really enjoy working out every day! It is the BEST stress reliever. Our family is also Disney obsessed! For the past 30 years our family has been on a journey with my son Steven who is Autistic. Let’s face it as mom’s we want to fix things the most. However, our journey became not about fixing Steven but about helping him to make the most progress possible and live the best life that he could. This diagnosis affects an entire family. I hope and pray that I can help families live their own Journey to the best of their ability. You can follow Kelly and Steven on Instagram at Growing Up Steven.

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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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