(part two in the Year of the Oxygen Mask series. I think there may be more coming)
I was sitting in a small restaurant, having lunch with a friend, when everything changed.
It was a rare treat. A kid free lunch. My friend lives two hours away and we met in the middle.
She’s an autism mama. Just like me.
So of course, we talked about our kids. And how the autism diagnosis has changed our lives.
The things we do now that we never thought we’d do. And the things we don’t do that we always thought we would.
The big pile of resentment that grows with each year, and the need to just let some things go.
My friend is a tireless advocate for families like mine, and she had recently run for elected office. I watched her campaign from the sidelines and became emotionally invested in her run, even though I couldn’t actually vote for her.
“I think the reason many of us got so caught up in your campaign was because you were doing something bigger…something more than just about autism.” The words sounded weird as they came out of my mouth. Offensive, even.
I tried to clarify. “I mean, you were talking about the economy, and schools, and taxes and…regular stuff like that. It was like you had a life outside of all this.”
Those words sounded even harsher.
My friend, being the incredible person that she is, saw through my fumbling words and understood my intent. She agreed that it was empowering to feel like there was more to her than being her son’s mom.
And then I said it.
“We spend so much time helping the world see past our kids ‘label’. We want people to see them for who they are and not get stuck on the diagnosis. Right?”
“Why, then, are we so connected to the label of ‘autism mom’? If we don’t want our kids to be defined by the label, then why are we so defined by it?”
Silence. We both just sat there and let those words hang. And simultaneously, we slumped back in our chairs.
“You’re right,” she said. “The autism diagnosis has taken over my life completely. There has to be more than that.”
Our kids need to see us as more than that.
It’s a conversation that I’m still playing back in my head. I’m a different person since my kids’ spectrum diagnoses. I had to change. I had to become a stronger person and better advocate for my kids to get the services they need. I had to read things I never thought I’d read. I had to know words that I never knew existed.
My kids needed the autism label to get them the help they needed in school and at home. It helps describe why they behave the way that they do. It helps others understand why my boys see the world differently and interact with others in a different way.
The “autism mama” label has introduced me to the most incredible people in the world – people I consider my best friends now. We share a common bond and life experience. They understand why I laugh and why I cry. They are the people I want to be around because they get me.
But there is more to us all.
When Howie is older, I want him to be able to say “Yes, I have autism. And I’m also a husband, father and I love to fix cars.”
My sons have autism. It makes them who they are. It explains them, but doesn’t have to define them.
I am an autism mama. It explains me.
But it doesn’t have to define me. I want to say “Yes, my kids have autism. And I’m also…”
The next step in The Year of the Oxygen Mask is figuring out what that “also” is.
I’m not letting go of the autism mama piece. That’s the most important part of me right now, and probably forever.
But I feel like I’m missing some other parts of my full identity.
“Scars are souvenirs you’ll never lose
The past is never far
Did you lose yourself somewhere out there?
Did you get to be a star?
Don’t it make you sad to know that life
Is more than who we are?” – Name by The Goo Goo Dolls