Kate Swenson is a distinguished author, autism mom, and someone I consider to be one of the most inspirational mothers in the autism world. From her books to her community over at Coop Troops, she impacts the lives of children with autism in incredible ways, and I’m excited to welcome her back to share what she’s been working on.
If you’ve been in the autism world for a while, and you haven’t heard of Kate Swenson from Finding Cooper’s Voice, I’m not sure where you have been. Kate wrote a new book called Forever Boy, and it is amazing. Forever Boy is an honest and inspiring memoir about autism, motherhood and love, and it just came out this week.
I first interviewed Kate two years ago on episode 70 of Turn Autism Around Podcast and got to interview her again for episode 170. We discussed the process of writing a book, the challenges it brings, and the lessons she learned since first discovering that Kate Swensons son, Cooper, was diagnosed with autism.
Kate Swenson is a wealth of knowledge and inspiration, and today I’m excited to share part of this interview with you as well as an excerpt from Forever Boy.
Since recording our interview a few weeks ago, I had the true pleasure of reading Kate’s book before the release date and it is raw, real and beautifully written!
Forever Boy Kate Swenson – A Memoir about Motherhood and Unconditional Love
Forever Boy by Kate Swenson is the story of how Kate found strength in her life with Cooper after he was diagnosed with severe nonverbal autism. Kate’s world was turned upside down with the diagnosis, but she learned to accept her son for exactly who he is and change her outlook on his life.
Now she is finding joy. This is a book of hope for anyone whose life went in a direction they weren’t expecting. Kate has been asked if Forever Boy will make you cry, and she says you may have some tears, but ultimately she hopes that this book, released with the help of HarperCollins publishers, inspires others and gives them hope for the future.
I did not cry at all when I read Kate’s book. I did laugh a lot, got chills several times, had difficulty putting it down (even after midnight a few nights) and found myself cheering Kate on and full of hope at the end!
Who is Kate Swenson?
Kate Swenson is a mom to four kids (Cooper, Sawyer, Harbor, and Wynnie) living in Minnesota. She is the founder of the blog Finding Cooper’s Voice and now the author of Forever Boy Kate Swenson has helped many families through her hard work and community on Instagram as well as a private Facebook group called Coop’s Troop.
She knew nothing about autism before Cooper was diagnosed. He was born during a very cold day in Minnesota more than a decade ago on December 6th. Right away she knew there was something different going on, that he didn’t act like the other newborns next to him. Kate had been around a lot of babies and she thought Cooper was unique. When I talked with Kate on episode 70 of Turn Autism Around podcast, she explained that she sort of brushed things off – like I had with Lucas – because his symptoms were inconsistent with what she’d read about autism online.
Still, he was diagnosed with autism three months shy of age four. But he could have been diagnosed at nine months if someone had been willing to diagnose him sooner and help back then. As of this interview he’s 11 years old and thriving. He is happy. Kate says, “he has taught me so much about parenting, and life and the world in general, which I think is one of the unique gifts that autism gives us. I’m just so happy to share his story and educate the unassuming person about how this is.”
Kate Swenson on her Inspiring Journey with Autism
Cooper was diagnosed with severe autism right away. It said in his notes “severe level three non-verbal autism communication disorder.” He was later diagnosed with an intellectual disability, apraxia, and anxiety. All of these diagnoses left Kate overwhelmed. “As moms, it stacks up and it gets like alphabet soup. And I think we start to realize that stuff’s really important for funding and helping, but it’s kind of okay to tuck that down a little bit and just focus on our child and who they are. Because all of those diagnoses get kind of heavy.”
I did a podcast episode with Tammy Kasper, SLP and BCBA who is an expert on apraxia and a video blog on intellectual disability that can be helpful for others who also feel like they’re getting alphabet soup. My son, Lucas, also has an intellectual disability along with autism.
Kate is an amazing writer. She got started on the popular blog Finding Cooper’s Voice, with over 760,000 followers – which blows my mind. This, however, comes with a double-edged sword. Because the more followers you have, there’s a greater possibility that people will judge and be critical.
In the first chapter of her book, Kate talks about a viral video that was featured on the Today Show (which she recorded in her car four years ago and has surpassed over 28 million views). That video went viral and changed her life.
Kate says this experience has changed the way she speaks about autism because she’s realized she could reach anyone with her words – especially people who want to be mean. And she also wants to be respectful of Cooper. She feels she was naive in the beginning and she’s grown and learned a lot since she started writing about Cooper. But she also knows that the parent’s journey matters, too.
To be able to share more, Kate created a small private group on Facebook called Coop’s Troop. I have personally been a part of this group since the beginning, and many of my own community members join as well. It’s a positive and supportive group with well over 3,000 members. It protects Kate and others from the shaming that goes on in social media.
Because parents can be shamed about really anything related to their kids on social media, it is especially important for a community like this to exist. It creates a safe space for parents of children with disabilities.
I had the pleasure to present at Coop’s Troops on the topic of potty training and even published a guest blog on Findings Cooper’s Voice titled, Can Children with Severe Autism be Happy? And if you want to learn more about potty training, make sure to check out my free potty training guide, where I share A, B and C.
Kate has also been tremendously supportive of me and my work. She left the most wonderful 5-star review of my book, Turn Autism Around.
It truly is the caring and helping that drives my work, and it’s such an incredible honor to know Kate. She is amazing.
I also met several professionals on Coop’s Troop and featured them on my Turn Autism Around® podcast. I spoke with Amanda and Kirby on IEPs, Diedra Darst on speech therapy, and soon I’ll publish my conversation with Jess Ronne, another author I met through Kate from Jessplusthemess. Coops Troops is a really great community for networking, information and for a lot of support.
The Process of Writing Forever Boy
It never crossed Kate’s mind to write a book, but she loves and adores writing. “That’s how I process things. I like to put the words on paper. I’ll even write with pen and paper. It just helps me get through some of my harder moments.”
It was a follower living in New York City that recommended Kate meet with an agent friend of hers. Kate and a friend flew to the city for a nice weekend and to meet with the agent. She ended up submitting a proposal and signing the contract the day before the world was shut down due to COVID-19. Kate then had six months to write her book.
“I consider myself to be a writer and it was really a humbling process, a lot harder than I thought it was going to be.”
Forever Boy is a powerful memoir style “inspiring story of us.” Kate starts the book talking about herself as a little girl and how she dreamed of motherhood. At 12 she started babysitting and nannying. She wonders what she would have done if someone had told her that her first special needs child would be disabled. Would that have changed her way of thinking? She never expected her child to have a disability, but there are no crystal balls in life.
Kate talks about meeting her husband and having a miscarriage in the book before getting to having Cooper and talking about “the ups and downs and turns and twists of his diagnosis.”
“You think it’s going to be so easy. But it’s not. There are no blood tests. There is no marker. We really had to fight for that diagnosis. And then over the years of trying to get him help and services, nothing fell into our lap. It was a constant push and pull for everything.”
Kate realized she was missing a lot of Cooper’s life grieving the things that he would never do. She knew she had to change her way of thinking, not change him. It took resilience.
“He was fine. He was exactly who he was supposed to be. I was the problem.”
She adopted the tagline: “Find the Joy.” She needed to live in a happy place and not let Cooper’s struggles overwhelm her. Kate’s perseverance is incredible.
Forever Boy by Kate Swenson (excerpts)
Here is an excerpt from Kate Swenson’s book, Forever Boy.
When the professionals first told me about autism, they described it to me as a spectrum. I immediately thought of a spectrum of light, like a rainbow through a prism, but it wasn’t that kind of spectrum or at least the experts didn’t explain it that way.
They described it as a long line, with one end being the most severely affected, while the other line is less affected. They threw terms at me like high functioning, low functioning, severe, moderate, and mild, even levels 1,2 and 3.
When Cooper was diagnosed, I told myself that he was on the right side of that spectrum. That he was high functioning, and that we won the autism lottery. I was convinced when we got the diagnosis that it was the good kind. I held on to that term. That safety blanket so tightly as if it would protect us.
After I learned to say the words, my son has autism outloud, and that took me a long time to be able to do. I started saying, my son has autism, but he’s very high functioning.
I soon learned that Cooper’s autism was being ranked on that spectrum. Before I knew it, instead of being Cooper, the boy with blonde hair who loved trains and smelled like the wind, he was a number. A listing of ASD in a file folder.
After I learned to say the words, my son has autism out loud, and that took me a long time to be able to do. I started. My son has autism, but he’s very high functioning. Our hearts seat lies when we are hungry and I was ravenous. I soon learned like most parents do. Cooper’s autism was being ranked on that spectrum.
And before I knew it, instead of being Cooper, the little boy with blonde hair who loved trains and smelled like the wind, he was a number, a listing of ASD and a file for. He was data and checkboxes and eventually a graph that would put him on the most severe end of that spectrum and tell my sunshine boy became a black and white list of diagnoses in my desk.
When I pictured that spectrum, the one they described to me, I imagined a long line drawn with a thick black Sharpie across a white wall down an endless bright hallway. It was straight as an arrow, no bumps, no Hills, no crevices. It felt clinical. It felt like I was standing alone in that hallway with the white walls and white floors, watching Cooper tell lines moving from right to left and farther away from me and everyone else.
It almost felt like we were doing autism wrong, moving in the wrong direction, bucking the traditional path and dripping bits of color everywhere. It required personal growth.
Mary’s Journey of Autism with Diagnosing Lucas
Lucas was diagnosed with autism in 1999. So there weren’t levels, and there was more confusion because back then there was PDD-NOS. He also got the diagnosis at three of intellectual disability. He went to a typical preschool without support. So he did look really mild. My husband and I both thought it was going to be mild autism, but I was in denial.
So it turned out to be moderate to severe autism. A month later, somebody else diagnosed him with PDD-NOS and it was like, well, what is it? And when I asked I had the developmental pediatrician and the psychologist from children’s hospital in Philadelphia in the room. The developmental pediatrician, Dr. James Coplan, gave him moderate to severe autism. The psychologist diagnosed PDD-NOS a month later. And I said, well, which is it? And he said, what you want to know is what he’s going to be like at eight and 18. And neither one of us can tell you.
Dr. Coplan explained – it’s like saying something is dark pink or light red. It depends on the day. It depends on the examiner. It depends on the testing they did.
I did a video blog on, can you tell how a two-year-old is going to do at eight or 18? And the answer is no, you can not tell even if it looks super mild. Lucas looked more “high functioning.” I’ve done the video blogs and podcasts on high-functioning versus low-functioning, which is now taboo.
But within each child are their strengths and special needs. If you’re a teacher and you have eight kids in your class and you were asked to line them up in terms of who’s highest functioning and who’s lowest functioning, you would have a really tough time because are we talking about communication?
We’re talking about problem behaviors, talking about reading, math, and taking them to a restaurant. How independent are they with toileting and showering and those sorts of things? And so it really is not helpful to compare high-functioning versus low functioning.
Kate Swenson and Autism Podcast Resources
If you have an autistic child or client with autism or signs of autism, here are some important resources that can help you start turning autism around.
I predict Forever Boy is going to be a bestseller not just for a week or a year but for decades to come and believe that Kate has done something really special for the autism community by writing this inspiring book.
I hope you’ll order Kate’s book, Forever Boy (available in hardcover, Kindle and on Audible with Kate reading it). I pre-ordered both the hardcover and Audible version! You can get it on Amazon or at your local bookstore (it’s in the Parenting motherhood section of my local Barnes and Noble store- very close to Turn Autism Around!). A special thank you goes out to harpercollins publishers ltd for helping bring this book and vision to life.
Also, please help Kate and I spread the word about hope and positivity by sharing this blog, purchasing our books and leaving reviews so other parents and professionals can find comfort and helpful resources for additional information!