This guest Q&A is with Kate Swenson who is the mother to two amazing little boys. Her son Cooper is on the severe end of the spectrum. She shares a glimpse into her secret world through videos at Finding Cooper’s Voice.
Hi Kate! How did the idea of filming your story first come about?
I started blogging about Autism when my son was first diagnosed. So many feelings and emotions go into raising a child…and then add in a word like Autism. As you can imagine I felt pretty alone. We were handed this diagnosis and sent on our way. I didn’t know anyone else in my real life that had an Autistic child. Nor did I know how to even start getting help. So, I started writing. And began navigating the secret world of Autism. I figured out the medical side. The financial side. The educational side. And I did it all on my own.
When Cooper turned 6 I felt like I was finally in a place where I could help other parents. So, in December, I started a Facebook page for my website. In 4 short months I have gained 31,000 followers. My main focus are sharing videos where I simply talk about Autism and the impacts on my life and family. Some are happy. Some are funny. And some are sad. And I never lie. I show the good and the bad.
I want to educate the world about disabilities and show that we are real people.
And if Cooper’s story can help one other family then I have done my job.
What has been some of the feedback you’ve received from the videos you’ve shot? Any favorites you’d like to share with our readers?
Feedback on my videos has been unbelievable. Being a mom to a special needs child often makes me feel super isolated. My life is so extreme and finding others who experience the same things has been a challenge in the best. Honestly, I didn’t know anyone who had an Autistic child when my son was diagnosed. And it seems like society almost wants to hide disabilities. So, I started talking about it. It’s as simple as that. And people have been so thankful. They say that they don’t feel so alone. I almost tear up sometimes at the wonderful comments. Here are a few examples.
“You are literally my sanity I’m crying cause you take all the words I can’t say out loud and say it.. I love your saying I’ll be using it from now on when I get those “looks”
“You are doing such an AMAZING job! Don’t let negative people bring you down. Those people have no clue what it’s like to walk in our shoes. So keep your head up!”
“I just love you and your family!!! Your words bring so much awareness!!! Thank you for sharing!!!! And keep it coming.”
Autism apps have become a hot topic today! What are some apps that have helped your son? Any assistive technology you’d recommend?
My son is very much a technology kid. We actually have 3 Kindles that we rotate and keep constantly charged. In the beginning I fought the use of technology. I’m an outdoor, hands-on mom. I’d rather go outside then watch television. But, Cooper had other plans.
I realized that Cooper NEEDS his videos. They bring him comfort and calm him. Often he will have it in his hand or near him just for the music. He also can relate to the characters in his PBS shows. I firmly believe that he thinks Sid the Science Kid and Thomas the Train are his best friends. They can get inside his world and make him belly laugh like no one in real life has been able to do. Why would I take that away from him? Cooper also learned all of his letters, numbers, shapes and colors from the PBS kids App.
As for communication Cooper uses the ProloQuo2Go App. It’s been a miracle. He can communicate up to 4 word sentences with his talking device. And even more exciting, he has learned to communicate emotions with his talking device. If a teacher spies a meltdown coming on it can be instantly lessened by asking Cooper to express his emotion. AMAZING. It’s truly given him a voice.
Cooper is so adorable! What are some of your hopes for him in the future?
When I was pregnant with Cooper I dreamed about so many things. I dreamed about teaching him to ride a bike, catch a fish and drive a car. I pictured all the things we would do together. Flash forward, my son is almost seven and severe on the spectrum. We have never done any of the things I dreamed about. He has no interest. For years I was devastated over this. Not because he’s Autistic…but because I felt that life was passing him by. It seemed like he was missing out on everything a child is supposed to experience. And then one day it hit me. He’s so happy. Every day is the best day of his life. My son finds more joy in a simple sound or picture than I ever thought possible. Every day is the best day of his life.
So, my hopes for him… I hope that he never loses his joy. I want him to always be safe, happy and content. I want him to laugh every single day. I want him to know love. I have other hopes as well. I want him to be potty trained. I want him to learn to tie his shoes and dress himself. I’d love if he developed a hobby someday other than trains. I hope he speaks to me someday. I hope makes a friend.
I’ve learned on this journey that it is very hard for parents to modify their picture of the future. It was for me as well. In the beginning I put so much pressure on myself and Cooper hoping that he would start talking or that his disability would improve. It only brought us both anxieties. So, I let that all go. And I remind people, I didn’t give up hope for my son. I just changed my hope to new things.
Personally, one of the biggest misconceptions I still see out there in our community is that too many people still see autism is a disorder that only affects boys. What are some misconceptions you see out there in the autism community today that you’d like to see debunked?
I personally feel that people refuse to understand that Autism is a spectrum and an invisible disability. If you’ve met one kid with Autism then you’ve met one kid with Autism. My son is on the severe side. He is nonverbal, not potty trained and extremely rigid. Often, we struggle to even leave the house because he gets so upset. My son is very happy at home. He is safe and feels comfort. He can relax and do his own thing. When our park story happened 99% of the feedback was…’Keep going to the park. Don’t give up. Bring your son everywhere.’ Yes, these are all great comments and so true. But…what people fail to recognize is that my son simply can’t do most things. Not right now anyways. And if we force him to say…go to a store or an event…it is so upsetting to him he feels the effects for days. People look at Cooper’s smiling happy face and miss the disability. So often he is struggling to understand what is going on around him.
Another misconception is how much of a fight it is to raise a child with a disability. My son and I are completely carving our own path. When he was diagnosed I honestly believed that we would get help right away. My son had Autism so I assumed I would get Autism resources. That’s not how it works. I feel like I am continuously having to fight for the best services in special education and benefits at the county and state level. I have to continuously prove he is not only disabled…but disabled enough to need help. When he was diagnosed I never wanted to be an advocate. I simply wanted to be the best mother possible and give him an amazing life. Now I realize that’s the true definition of advocate.
For those reading this how can they learn more about your phenomenal efforts in our community?
Stop by my website at www.FindingCoopersVoice.com. I also have a very active Facebook Community where I share videos almost daily. https://www.facebook.com/findingcoopersvoice/ Right now I am doing an Invisible No Project where I feature a different person with Autism every day for the month of April. It’s been pretty amazing.
Anything else you’d like to share with our readers?
My goal with everything I am doing is to simply start a conversation about Autism. I think that when people hear the word they are scared. It’s unknown. It’s different. Cooper and I are here to show people that Autism is not scary. He is a beautiful, loving, happy boy that just processes things a little differently. No, he can’t talk but yes, he understands everything you are saying. I want people to take time to get to know him and see all the joy that he brings to the world. His disability does not define him. He is so much more than Autism. He is Cooper.
Editor’s note: Kate’s story has really touched me. Her love for her son is undeniable and I believe is the reason for her astronomic rise to viral video after viral video. Kate gives her heart to every video she produces and truly let’s us into her world. If you can, please follow her Facebook page to learn more about this incredible advocate we are lucky to have in our community. – Kerry Magro