Living with an Autistic Sister

Why Autism Awareness month is so important to me

Jolee and Shelby Soberalski are sisters from Ludington, MI. Jolee, was born with Autism. Shelby is a Junior studying Graphic Design and Art History.
Jolee and Shelby Soberalski are sisters from Ludington, MI. Jolee, was born with Autism. Shelby is a Junior studying Graphic Design and Art History. Courtesy of Kelly Nash
April is autism awareness month. I’m sure you’ve seen it around campus and might have seen it online. But why should you care about it? What’s the big deal?

To me, it’s a very big deal.

In February of 1991, my sister, Jolee, who was born with deformities and complications. The umbilical cord had been caught around her neck before birth and caused brain damage. Her face was pushed in and during the first year of life, she had more surgeries than most people will have in their lifetimes.

After much thought, my parents decided to have another child, and I was born in August 1993. At the time when I was born, Jolee was doing pretty well. She wasn’t developing at the normal rate for her age, but she could speak quite a few words.

When I was a few months old, Jolee had another surgery. One of her eyes would look up and another would look down, so the surgery was to correct it.

As a result of this surgery, Jolee stopped talking at the age of 3. She wasn’t mute. She would still mumble, but it wasn’t a structured vocabulary like it used to be. That was when our mom discovered that Jolee had autism.

Growing up with an autistic sibling has been quite the adventure. When she was born in 1991, there wasn’t much known or accepted about autism. Most of the time, the parents were blamed for bad parenting, which is not the case. A lot of people would judge Jolee and didn’t want to get to know her.

I remember asking my parents when I was younger why Jolee was different than other people. My parents responded with, “Everyone is different than you. Nobody is the same, but that doesn’t mean that they should be looked down upon or treated any different than you want to be treated. Everybody needs love and fairness.”

It wasn’t always easy having an autistic sibling. Since she couldn’t talk, she couldn’t tell us what she wanted or needed. Jolee is currently 24 years old, but she’s mentally stuck at a three year old level. She is obsessed with Dora, Barney and all those little kid shows. She can’t dress or bathe herself. She’s totally dependent on my parents and I to take care of her.

But there is nothing that I would change about her.

She likes to eat all my food, she pinches me, she knows exactly how to push my buttons and she flirts with my boyfriend. But she also gives the best hugs, has the most infectious smile, makes me laugh and has the biggest heart I’ve ever known.

I never asked for a sibling with disabilities, but she’s been the best gift I’ve ever been given. I’m so lucky to have her in my life. She’s my best friend, my rock, and my world. I can’t imagine where I would be today without her. Even though she has complications, that doesn’t stop her. She lives a full and happy life.

Every day I wake up and I’m thankful that I can talk and walk and do what I do in life. I know that there are people out in the world that aren’t as fortunate as me. My sister hasn’t been dealt the best cards in her life, but she is the happiest person I know. She doesn’t complain or ask for pity. She’s simply happy and lives her life to the fullest. If that isn’t the best role model a younger sister could ask for, I don’t know what could be. She’s taught me so many things in life and she inspires me to be the best I can be.

I wish that everyone could have the chance to get to know someone with autism. It really opens your eyes to the world and makes you think. So the next time you see someone who looks different than you, or acts differently than you, just stop and think. You don’t know what daily struggles they have. They are people too.

Jolee is a lot more than an autistic person. She loves music, movies, books, basketball and much more. Everyone on the autism spectrum is different and deserves to be respected as the beautiful human beings that they are.