Coming out

e5e23d6213e7cc30724a46aa1ba6d5c6Today is World Autism Day. Whoops. Dropped the ball on that one.  I didn’t even know there was such a thing. But I probably should know that…MOMMY FAIL.

I am staring at Facebook right now and trying to decide if I want to post anything. If I do, then everyone knows that my son has autism. If I don’t, I feel like I am shaming it. Such an odd feeling.

What if people look at it and feel bad for me. For our family. I don’t want that. But everyone should know…right? I’m not embarrassed. Or ashamed.

But I also don’t want to be like….‘This is Cooper. He is autistic.’ I don’t want that either. It’s a damn fine line I tell ya.

I just realized that April is six months since we received Cooper’s diagnosis. Six months since we drove three hours away to sit in a little room and have therapists play with Cooper.

I will never forget that experience for as long as I live. I was sweating. I was on the verge of tears. I was so mad at Jamie because we were late. And because he wasn’t nervous or sad or angry.  I wanted to know why my son was different. I wanted answers. But I also didn’t want it to be autism so my plan was to fake it till I made it. I was like a tornado overcompensating for Cooper’s every need.

And Cooper was so on. He was social and friendly. And then I started to get even more nervous. What if they say it’s not autism and it’s something else. If you ever want to know what crazy looks like ask for video from that day. I was manic.

And then Cooper started flipping the light switch. On. Off. On. Off. And laughing uncontrollably As we sat there in the dark I knew what was coming. Sigh. I remember thinking, “they can’t see me cry in the dark.”

We left there with a diagnosis. I changed after that. Cooper didn’t. But I sure as hell did.

There are time when it’s felt like a death sentence. And there are times when I forget that he even has it. So how do I put that in a damn Facebook post?

As much as I don’t want to ever talk about autism I would by lying if I said autism wasn’t our whole lives.

One conversation at a time I guess.

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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. Ain't No Shrinking Violet on April 2, 2015 at 6:49 pm

    This will always be with you…who to tell, who not to tell, how much to share. When I was diagnosed with my own disease I went through all that and I’m sorry to say it never really gets more clear. Sometimes you get it right, and sometimes you get it wrong (you’ll know if you get it wrong by people’s reactions). There have been times due to circumstances I’ve had to admit both my RA and my son’s ASD to one person in a short period of time, and then see people physically back-pedal from us like we’re contagious. Not everyone is comfortable around disability, that’s for sure.



  2. christabella611 on April 2, 2015 at 11:20 pm

    You can post that it is World Autism Day and that you support people with autism without bringing Cooper into your current conversation. World Autism Day is trending on facebook, so no one would be the wiser. Raising awareness is for everyone with autism. Encourage acceptance of those with autism. Cooper isn’t suffering alone (and you should know neither are you – we all support you) and those of us on the spectrum need every advocate we can get. You will still have the ability to have the conversation with whoever you want, and whenever you are ready. This is a great opportunity to educate others without making it Cooper focused, so that when you are ready for that conversation people know what it is and what it isn’t… and it isn’t a mystery. “You are braver than you believe, stronger than you seem, and smarter than you think.” – A.A. Milne (Winnie the Pooh)



    • Avatar photo findingcoopersvoice on April 2, 2015 at 11:29 pm

      You are completely right. I love your comment!!