The Lesser Evil

1f9c85e7a64dff983a8f19aa033caefdWhen Cooper was (mis)diagnosed with a moderate hearing loss in both ears at age 2 I thought the world was ending. Dramatic…YES. But, I am an honest person and that is how I felt. I kept picturing him getting teased. He had just turned 2 and it was the beginning of the bad. (although I didn’t know that at the time.) I had a new baby and I was fighting the baby blues and nursing and I was told that my 2 year old would never hear birds chirp or wind through the trees.

And he had no words.

And also, I was dealing with absolutely crazy people and that didn’t help me at all. I often refer back to the woman that came to my house and told us to stop speaking to Cooper completely and switch to sign language. She is the same woman that gave me a video about completely deaf children. I stayed up so many nights scouring the internet for help. And I drank way too much wine.

I couldn’t get past the fact that Cooper would have to wear hearing aids his whole life and that he would need extra help in school to hear. And I thought constantly about the bullying. Looking back, why the hell didn’t someone shake me and tell me how minor that would be??? He would be able to hear and talk and thrive. Hearing aids would help him. I am not lessening a hearing loss in anyway. Please trust me. What I am saying is that I would do anything if Cooper ‘just’ had a hearing loss. That would mean he could learn to talk. And once he could hear he could make friends. And so on.

I can take myself back to the exact moment when the audiologist told us that Cooper could hear everything. She hugged me and I cried. And then she sat me down and asked me if I considered the fact that Cooper might be on the spectrum. I didn’t even get 5 minutes of happiness. INSTANTLY, I was like, let’s go back to the hearing loss thing please.

We moved past the ASD right into Apraxia, which has to do with motor processing. Here is how I describe apraxia. Your brain has all these different paths to parts of your body. Your mouth, hands, arms, feet, etc. The brain decides what to do and sends a message down the path. Well, when you have apraxia, the message isn’t making it down the path. It’s getting lost or caught up somewhere. So, a kid with apraxia knows what they want to say, but it won’t come out right. Per my usual fashion I found blogs about apraxia and did my research. I remember thinking, I can do Apraxia. I got this. We are going to kick Apraxia’s ass. Fast forward to age 3.5.

Cooper still doesn’t want to talk. He’s not mimicking or trying to say different sounds or words. Shit. Again, I want to go back to hearing loss.

And then it all got put into perspective.

A woman from the Memorial Blood Center did a presentation at my office last week. She talked about how her 2 year old nephew has cerebral palsy and will soon lose his ability to walk and talk. And it’s happening really fast. I looked at the pictures of this little boy and I saw Cooper and Sawyer. And I thought about his mom and dad and the pain they must be feeling. I can’t imagine.

No matter how hard it is with Cooper I need to thank God that I get to snuggle this little boy every single day. And that every morning he HAS to kiss me and hug me immediately when he wakes up. He will find me wherever I am in the house. Apraxia or a hearing loss or ASD can’t take that from us.

I wish I could flash forward 5 years and see what our life looks like. Just a glimpse.

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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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  1. redlipstickmama on June 10, 2014 at 5:06 pm

    My son has been just referred to an audiologist because at 2 he just uses two or three words. I am kind of preparing myself for any possibilities but as we are getting nearer what scares me most is how I am going to react. What if I lose it completely while my baby is smiling back at me ? This freaks me out.

    • Avatar photo findingcoopersvoice on June 10, 2014 at 5:10 pm

      Oh my gosh I know exactly what you mean. If you are like me you will go through a WIDE variety of emotions:-) And if he does having a hearing loss you will realize that it doesn’t change your son in any way. It just takes a while to get there. And I chose to take a long route to get there. I’m here for you mama. Let me know if you need anything.

      • redlipstickmama on June 11, 2014 at 3:03 am

        Thanks so much xo

  2. Jill on June 10, 2014 at 11:29 pm

    I have so many people that think I “have it bad” or having a child with autism is “unimaginable”. Like you said- there is always someone who has it worse. I try to picture Mason as a typically developing child and although I so much want him to be-I cannot imagine him any other way than the way he is. he is just my Mason Man….autism and all 🙂