The Secret World of Finding Cooper’s Voice

I am continuously asked how my world has changed since opening up my family and life to the world of Facebook. First, I want you to know I started the blog, Finding Cooper’s Voice, three years ago because I had no one to talk to about my son’s autism. I poured my heart out daily and had very few followers. My sole purpose was talking about my emotions around my son’s confusing disability. It was the best decision I ever made.

Going Viral

In January of this year, I decided to dive into the world of Facebook and create a page for Finding Cooper’s Voice. Trust me, I was nervous. And I had no idea what I was doing. My goal was simple. I wanted a place where I could share all of the Autism stuff I found on Facebook and not muddle up my personal page. I assumed I would have very few followers since I was going to do no promotion. Simple, right?

And then, as the kids say, I went viral. I had two videos go wild on the internet. The first is a video called, ‘The Last Time We Think This Is Going To Be Okay.’ I talk about the last time I realized that my son was not going to ‘just’ snap out of it. He was autistic and was going to be autistic for his whole life. I had taken my son to a very public event and it did not go well. I spent the evening thinking about his struggles and who was going to care for him after I was gone. It’s the first time I cried on the internet. Today, the video has been viewed over 3 million times on multiple sites. Crazy! My second video to go viral was a rant about bullies at a special needs park. I was on multiple news outlets, Star Tribune, Huffington Post, Babble, UpWorthy and many more. My small Facebook page changed rather quickly. Almost overnight.

A Few Facts For You

After six months I am nearing 40,000 followers on Facebook. A little old mom from Minnesota is making a presence in the Autism World. I’ve been told by readers that my videos have helped them to feel not so alone. And I couldn’t be prouder of the community I have built.  On average I reach 1.7 million people a week through Facebook, Instagram and my website. I receive on average of 140 emails and messages a day and even more comments. And with the good comes the bad. On average I have to ban 10 people a week who say things to me like…I’m a terrible mother, I am ugly, my kid is brat, my kid is ugly, I should just die, I should just shut up, and my personal favorite…autistic kids are a product of the devil. Terrible comments like this come with the territory. I would love to tell you that I am invincible and I have thick skin. Truth…I am human. Words hurt. But, thankfully, I am able to delete them and move on. I love what I am doing. I love the community I have built. I am proud of Finding Cooper’s Voice. I often wonder though who these people are that hate me so much. Do they know I am just a mom?

I Am A Real Person

My name is Kate. I am 34. I work for PBS full time as a Digital Project Manager. I have two amazing boys. I own a home. My son’s dad is my rock. I have three dogs. I am a human. And just like you I am trying to exercise, drink water, get enough rest, succeed at my job, save money, pay off debt, encourage my kids, not lose my mind and walk my dang dogs. And on top of that I am trying to get my autistic son the best therapy possible, get him to use the toilet, eat his supplements, try new foods, get him too stop wearing his life jacket, lining up chairs, and breaking picture frames, use his talking device, not worry day and night about losing my son’s Medicaid, and keep him from running into oncoming traffic every chance he gets. See, we aren’t all that different you and I. The only difference is I share my life on Facebook. I invited the world to take a peek into the secret world of severe autism. I willingly decided to open up my whole world too scrutiny. And wow am I busy because of it. I blog in the evenings. I serve on autism boards and committees in my spare time. I advocate at the county, state, and federal level. I post funny, sad, adorable stories on Facebook. I talk about autism and tell you my highs and lows. I answer questions and facilitate discussions. And I try to do it with a little class.

A Very Public Accusation

Today, I was publicly accused of using the R-Word on my most recent Facebook Video. The video is about hacks that I use to keep my autistic son safe. Normally, I never engage with crazy, outlandish commenters. I just delete and ban. But this one was below the belt. This comment went directly to the heart of what I do and the core of my mission. I’ll be honest…it really stung. When I responded to this woman she stood by her accusation and told me she watched the video multiple times and heard me say the R-Word.  I believe what she is referring to is when I say the t-shirt is from Target.

Normally, I refuse to be a person’s punching bag on Facebook. This is why I just ban people. This was different though. I chose to call this woman out. She was threatening my character, my role as a mother, my role in the special needs community, etc. The response to that was less than favorable. I was accused of being a bully. Me. Kate.

So, I stepped back. I realized I veered from my educational route. I let a person who was defaming my character get the best of me. I am back now. And please note, if you accuse me of an untrue fact I will delete and ban you. So, save yourself some time.

Here is my response to the accusation that was placed on me. I have never, nor would I ever, use the R word on this page or in my real life. Since I opened myself up to the world of social media in January of 2017 I’ve had some pretty nasty things said to me. But being accused of using this word takes the cake.

11 Reasons why Kate Swenson, Author at Finding Cooper’s Voice, and mother of a two super heroes, would never use the R-word:

  1. I am not an ignorant jerk.
  2. I don’t make jokes by putting other human’s down.
  3. I am a good human.
  4. I am an advocate for people with disabilities and their families.
  5. I am the mother to an autistic, disabled child.
  6. I have a voice in the autism community.
  7. I am on a public platform and would lose the community I have built and all of my followers.
  8. I have opened up my life and my family’s life to the cruel world of social media and I would be jeopardizing not only my character but theirs.
  9. I don’t believe that word accurately describes my child or any other human for that matter.
  10. I am so anti-bullying/pro-inclusion it’s borderline scary.
  11. Lastly, when my son was first diagnosed at age 3 with Autism he was given the diagnosis of Mental Retardation. I was livid, crushed, mortified and angry. I couldn’t believe that term was even being used. I refused to allow it to be on his medical record and we even switched doctors.

So, back to the original question….”How has my world changed since opening up my life to the cruel world of social media?” Some days it’s amazing. Some days I feel like I am truly helping people. I see the community I have built and I am proud. And I truly, truly believe that Cooper and I are going to change the world of Autism. But today, I don’t feel that way. Today, it just stinks.

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Comments

  • Karen Luther

    June 29, 2017 at 12:37 pm
    Reply

    You're incredible!! As a wife, a mama, an advocate, a teacher...and just a badass woman

  • Alison omel

    June 29, 2017 at 12:47 pm
    Reply

    Your amazing and inspire so many people!! Keep up the amazing work !

  • TracyEllen Carson Webb

    June 29, 2017 at 12:58 pm
    Reply

    I'm so glad I found you and I get to hear your message every day. I don't always comment. Sometimes it takes me several days […] Read MoreI'm so glad I found you and I get to hear your message every day. I don't always comment. Sometimes it takes me several days to watch every single video. Instead of binge watching Netflix, I binge watch you. You have better content. Thanks for being a voice for those of us who don't always know what to say. Read Less

  • Kiersten Dauphinee

    June 29, 2017 at 12:59 pm
    Reply

    Kate I am so sorry you were accused of such a horrible thing! Like you said in the blog you have people thank you daily […] Read MoreKate I am so sorry you were accused of such a horrible thing! Like you said in the blog you have people thank you daily but I would like to thank you. I have a 2 yo boy who is not yet diagnosed and I watch your videos daily. I learn so much from you! Really feeling the isolation lately and your videos are comforting to me do thank you so much! Sending love from Alberta canada ❤ Read Less

  • Luz

    June 29, 2017 at 3:34 pm
    Reply

    I'm so sorry this happend to you. I just want to know... Whats the R-word???

  • Janet Greene

    June 29, 2017 at 3:53 pm
    Reply

    I can't tell you how brave I think you are to do this. I've thought about doing it myself, but I was afraid of precisely […] Read MoreI can't tell you how brave I think you are to do this. I've thought about doing it myself, but I was afraid of precisely the problems you've encountered. The fact that you're still doing despite these hassles makes me admire you all the more. I need you to know that I saw your video about "the last time..." just when I was having those same thoughts myself (my 13-year-old son is verbal and has a lot of amazing talents, but it is becoming more and more plain that he will need assistance throughout his life) and it was so valuable to me to hear someone else -- another mom who seemed like a nice person -- say it out loud, and acknowledge the pain that comes with that realization. So, thank you for putting yourself out there, and remember that for every uninformed jerk (autism is from the devil? are you serious?), there are literally thousands of us real, live autism moms who appreciate that you take the time and make the effort and are brave enough to stand in the light so that we can see you. Read Less

    • Ally
      to Janet Greene

      June 29, 2017 at 6:53 pm
      Reply

      The mean comments that you get have nothing to do with you... but they speak volumes about the people sending them. I can only imagine […] Read MoreThe mean comments that you get have nothing to do with you... but they speak volumes about the people sending them. I can only imagine how desperate, needy and UGLY are the people wanting your attention, any attention... even negative. But they need much more help than you can give them... they have issues you cannot solve. Seeing what you do for your kids makes me think it takes a very lowly kind of person to throw mud at you... I kinda feel sorry for them. Read Less

  • Donna Peterson

    June 29, 2017 at 9:15 pm
    Reply

    I stumbled upon your FB page and blog a week or so ago. I have watched several videos including your hack video. I […] Read MoreI stumbled upon your FB page and blog a week or so ago. I have watched several videos including your hack video. I feel certain I would have been sensitive to any use of an inappropriate term. Accusations like that are so bizarre. I do not have an autistic child but work as a para in a TK- 2nd BASE classroom with all autistic students. My goal is to learn as much as I can about autism so I can do the best job I can while working with the students in my class. I have learned so much from you already. Cooper is so fortunate to have you as his mom. Read Less

  • Nat

    June 29, 2017 at 10:49 pm
    Reply

    There's so many really messed up ppl out there just waiting to put other good ppl such as your self down. It's only made me […] Read MoreThere's so many really messed up ppl out there just waiting to put other good ppl such as your self down. It's only made me stronger personally. I truly don't give 2 sh*#!s what ppl think. And this is advice coming from a person who used to care about what most ppl thought. But no longer, not since I had my son with ads:) and oh man does it feel good Not to care about other ppl. Read Less

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About Me
About Me

Hi, I'm Kate. I am the mother to a little boy with severe, nonverbal Autism. This is a glimpse into our heartwarming, sad, scary, funny, loving and secret world. Check out my video tab to hear me ramble about Autism.

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