Kate Swenson’s favorite photo of her and her 18-month-old son, Cooper, is on the cover of Swenson’s new memoir, “Forever Boy.” It’s a charming mother-son photo, and no one looking at it would know that the handsome little boy has non-verbal autism.
“We were having a really hard time getting the shot, with Cooper running around, nonstop,” Swenson recalled. “He had no words, but he held my face in both hands and looked me in the eye. The photographer, Melanie Gunderson, filmed our love. It was like Cooper was telling me a secret.
Swenson, a graduate of the University of Wisconsin-Higher, is something of a hero in the world of parents of autistic children. Across multiple platforms, she has 900,000 followers for her “Finding Cooper’s Voice” blog, which welcomes readers as “a place where you can celebrate the challenges of parenting a child with special needs. And a place that understands you. .
She contributes to Today Parents, the Today TV show and the Love What Matters blog.
Swenson’s supporters come from all over the world.
“Autism knows no boundaries,” she said in conversation from the Woodbury home she shares with her husband, Jamie, and their four children.
“My followers are very diverse – teachers, grandparents, parents. Many of them are people who have had to pivot in life. They had expectations that didn’t work out, and they say they find resilience and joy in my stories. It was unexpected for me. When I started writing, I thought no one would read my stuff.
She soon found many people had been helped by her heartfelt and honest memoir of the darkest and happiest days as a mother to Cooper, who is now 11. Reader feedback, she says, has been amazing.
“Every day I get a comment from a mum saying, ‘My child was diagnosed today. I’m following you and I’m not that scared,'” Swenson says. “A mum approached me holding my book and said, ‘I’m going to give it to every person in my life who doesn’t understand autism’.”
One of Swenson’s friends, an experienced writer with a long history of autism work, told him that the media and book publishers don’t talk about disability. It was dark, unfamiliar and perceived as scary
“She told me my book was going to change the world,” Swenson recalled.
“I’m not afraid to talk to people about autism. When my son was diagnosed, I went to a bookstore and looked at the section – who knows what it was called – on autism. These clinical books said, “It’s autism and it’s not.” It didn’t help me at all. When I was writing my book, I was trying to tell it in stories, to show autism in our world, to help people identify and understand better.
Cooper has come a long way from when he was diagnosed at age 2 and his mother knew there was something different with him, but didn’t get much help from the family. from the experts. Sometimes she felt like she was screaming into the void. After Cooper was finally diagnosed with autism and was looking for ways to cope, some professionals told her things like, “Well, that’s autism.”
Swenson writes candidly about those difficult early days when she desperately wanted her son to make the marks most children get, like language at a certain age. In addition to not speaking, Cooper has never kept quiet. He was running from room to room all day, flapping his arms, banging his head, waking up at 3 a.m. As he got older and ran faster, the road fascinated him. The house had to be well locked. Eventually, Kate felt like a prisoner in her own home.
Kate and her husband dealt with their son’s stress in different ways, and they eventually divorced, but remarried a few years later.
“We never gave up on Cooper. We cherish him so much. He’s amazing and empowering,” Swenson says.
Eventually, she realized her son didn’t need to be fixed — she did, by accepting who he is, that autism is a part of him.
It helped when Kate and Jamie, who has her own insurance business, moved from Duluth to the Twin Cities where there were more resources for Cooper, who was joined by the Sawyer brothers, now 9, Harbour, 3 years and her 10 month old sister. Wynnie.
Now Cooper drinks without spilling and he’s not constantly running around anymore. After her parents learned that autism can cause anxiety, calming medication helped many of her behaviors.
Cooper is still working on what his mom calls “social times,” like sitting in the middle of the line at Target if he’s tired, or touching his cheek against the carpet to feel the fabric.
“Cooper has no understanding and that makes people uncomfortable,” Swenson says of being in public with her son. “It’s one thing for a 2 or 3 year old to have a temper tantrum, but Cooper is a big boy and he often has trouble struggling for whatever reason. People are watching. But I believe in optimism and the fact that people are generally nice. I meet their eyes with a smile. I say when you see Cooper struggling, you see his hardest time. Grant us grace.
What is so simple for the other children becomes difficult for Cooper, says his mother, but everything that goes well is a success that most children take for granted. Like his pride when he overcame his fear and rode his first therapeutic riding session.
Swenson hopes her book will counter the myths about autism she hears a lot, such as the belief that people with autism are cold and show no love. Her son, she says, is very affectionate.
Another myth is that people with autism cannot lead full lives. This is the one Swenson really wants to blow up.
“That’s why I do what I do,” she says.
“I’m being honest with parents and saying there’s joy and goodness when you have a child with autism. A big part of our lives is about the money we make, buying bigger houses, what we achieve. Many of us measure success by this. Looking at Cooper’s successes is meaningful, even if he’s not the CEO of a company. He’s surpassed anything painted on him in the It’s growing and thriving Autism isn’t the end, it’s a new beginning.
KATE SWENSON AT ST. SAINTS-PAUL
- WHAT: Meeting with Kate Swenson, author of “Forever Boy: A Mother’s Memoir of Autism and Finding Joy”.
- WHEN OR: 4:30 p.m. Thursday, May 5; Club Level, CHS Field, St. Paul, before the Saints-Iowa Cubs game at 6:30 p.m.
- ADMISSION: The $30 package includes a reserved Infield ticket, an autographed copy of “Forever Boy,” and the chance to speak with Swenson about autism.
- INFORMATION: Saintsgroups.com, Password: ForeverBoy
- PUBLISHER/PRICE: Park Row Books ($27.99)