Kate Swenson has gained a huge following over the past few years blogging about her experiences raising her son, Cooper, who lives with nonverbal autism. Over the years, Kate has grown her website, Finding Cooper’s Voice, into what she describes as “a dynamic and thriving community full of people who want to learn about autism.” This summer, Kate took time out of her busy schedule to chat with Intercare about her blog and her journey.
Many people started following your story after you and your son, Cooper, went viral following an incident at a special needs park in 2017. How did that incident change the trajectory of your lives and your blog?
Speaking out about challenges I have faced as a mom has its positives and negatives. While it opened me up to scrutiny, it also helped me grow my page into an amazing community of people. That video reached hundreds of thousands of people who now hopefully offer compassion and understanding instead of judgment when faced with a child who is differently abled. That video was my first real step into advocacy.
You’ve always been incredibly candid about the realities of raising a child on the spectrum, has that been difficult at times? Do people ever criticize you for being honest about some of the more difficult aspects of raising a child with nonverbal autism and, if so, how do you deal with that kind of feedback?
People will always find something to be negative about. At first, it really affected me, and I thought about quitting numerous times. But it also made me stronger and opened my eyes to how little people outside of our world understand autism. So, in a way, the difficulties have also motivated me to do more.
How has blogging about your and Cooper’s experiences helped you in your journey parenting a child with severe autism?
Blogging has brought the most amazing people into my life. Finding other parents who understand is one of the most important things you can do for yourself. I have built an incredible online community called Coop’s Troops with parents just like me. We support each other, give hope, and a virtual hug when needed. If you’d like to join us, click the blue support now button on my Facebook page, Finding Cooper’s Voice. We would love to have you!
_You must receive a lot of emails and DMs from other parents of children with severe forms of autism. Have any stories or messages from readers really stood out to you or touched you? _
This is my most favorite email. It’s on my wall:
What advice do you have for parents grappling with the news that their child suffers from a severe form of autism?
Take time to let the news sink in and don’t let anyone rush you through your feelings or tell you what you are feeling is wrong. Then, pick yourself up, and start building your child’s world. Find the best services and resources for them. Build their village. Put supports in place to help them succeed. And never, ever give up hope.
If you could go back in time and tell yourself one thing about raising a child with nonverbal autism, what message or advice would you send to your past self and why?
Our children are lifelong learners and when you are at your hardest point, remember, it won’t be hard forever. And I’m not saying it will all necessarily get easier but you, as a parent, will get stronger and smarter. You will figure out how to keep living and adapt. I promise. Our family is thriving more each year. Simply put, it won’t be hard forever.
How do you balance your other children, Sawyer and Harbor’s, needs with Cooper’s? What advice do you have for other parents of children with severe forms of autism who want to make sure their neurotypical children feel like their needs are being met and they’re getting the attention they need while still giving their neurodiverse child the special attention and care they need to survive and thrive?
Our family is constantly striving for balance. As two working parents, with three busy boys, it can be hard. And add Cooper’s struggles with being in the community it gets complicated pretty fast. A few years ago, we made a few decisions. We hired a Personal Care Attendant who could help us in our home with our son. She spends a few hours a week with us and focuses her love and attention on Cooper. That allows us to get outside with our other boys, go to hockey, parks, etc. Jamie and I often split up as well, one of us staying with Cooper and the other taking the other two boys to do things in the community. We have found a balance and it’s what every family should strive for.
Are there aspects of your and Cooper’s journey that you consider off limits for your blog? Why or why not?
As with any person who shares their life online, I have limits to what I will share for a few reasons. People can be incredibly cruel; I’ve seen it firsthand. It can also be dangerous as well. But mostly, I want to respect my children. I will never share a video or photo of my children struggling negatively. I don’t want to embarrass them or give bullies any ammunition to use against them.
What impact do you hope your blog has on the autism community?
I have two goals. Number one, I want to bring families together. Having a child diagnosed with autism, or any other disability, can be incredibly isolating and scary. I want to change that. I want families to find each other, give and take support, help educate each other, and be a shoulder to cry and laugh on. And from the very beginning.
Secondly, I want to educate the person in this world who knows nothing of autism. I want them to see firsthand the beauty and joy as well as some of our struggles so when they can offer kindness instead of judgement when they meet someone like my son. And in turn, they can educate others too.