Readers and writers: ‘Forever Boy: A Mother’s Memoir of Autism and Finding Joy’

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 is a charming mother-son picture, and nobody looking at it would know the beautiful little boy has nonverbal autism.

“We were having a heck of a time getting the picture, with Cooper running all over the place, non-stop,” Swenson recalled. “He had no words, but he held my face in his two hands and looked into my eyes. The photographer, Melanie Gunderson, caught our love on camera. It was as though Cooper was telling me a secret.”

Swenson, a graduate of the University of Wisconsin-Superior, is something of a hero in the world of parents with children who have autism. Across several platforms, she has 900,000 followers for her blog “Finding Cooper’s Voice,”  which welcomes readers as “a place where you can celebrate the challenges of parenting a special needs child. And a place that understands you.”

She is a contributor to Today Parents, the Today television show, and Love What Matters blog.

Swenson’s followers come from all over the world.

“Autism knows no boundaries,” she said during a conversation from the Woodbury home she shares with husband, Jamie, and their four kids.

“My followers are very diverse — teachers, grandparents, parents. A large number of them are people who had to pivot in life. They had expectations that didn’t work out, and they say they find resilience and joy in my stories. That was unexpected for me. When I started writing I thought no one would read my stuff.”

She soon found that lots of people have been helped by her heartfelt, honest memoir about the darkest and happiest days as the mother of Cooper, who is now 11. Readers’ feedback, she says, has been amazing.

“Every day I get a comment from a mom who tells me, ‘My child was diagnosed today. I am following you and I m not so scared,’ .Swenson says. “A mom walked up to me holding my book and said, ‘I am going to give this to every person in my life who doesn’t understand autism’.”

One of Swenson’s friends, an experienced writer who has been in the autism field a long time, told her that the media and book publishers didn’t used to talk about disability. It was dark, unknown and perceived as scary

“She told me my book would change the world,” Swenson recalls.

“I am 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 — about autism. These clinical books said, ‘This is autism and this isn’t.’ That didn’t help me at all. When I was writing my book I tried to tell it in stories, showing autism in our world, helping people relate and understand more.”

Cooper has come a long way from the days when he was diagnosed at 2 years old and his mother knew there was something different with him but didn’t get much help from the experts. Sometimes, she felt like she was shouting into a void. After Cooper was finally diagnosed with autism and she was looking for ways to cope, some professionals told her things like “Well, that’s autism.”

Swenson writes frankly about those hard, early days when she was desperate for her son to make the marks that most children achieve, such as language at a certain age. Besides not speaking, Cooper never held still. He ran from room to room all day, flapping his arms, hitting his head, waking up at 3 a.m. As he got older and ran faster, the road fascinated him. So the house had to be securely locked. Eventually, Kate felt like a prisoner in her own home.

Kate and her husband handled stress over their son in different ways, and they finally divorced, but remarried a few years later.

“We never gave up on Cooper. We treasure him so much. He is amazing and challenging,” Swenson says.

Eventually, she realized her son didn’t need fixing — she did, by accepting who he is, that autism is part of him.

It helped when  Kate and Jamie, who has his own insurance business, moved from Duluth to the Twin Cities were there were more resources for Cooper, who was joined by brothers Sawyer, now 9, Harbor, 3, and 10-month-old sister Wynnie.

Now, Cooper drinks without spilling and he no longer runs around constantly. After his parents learned that autism can cause anxiety, calming medication helped many of his behaviors.

Cooper is still working on what his mom calls “social moments,” like sitting down in the middle of the checkout line at Target if he’s tired, or touching his cheek to 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 tantrum, but Cooper is a big boy and he has a hard time often, struggling for whatever reason. People stare. But I believe in optimism and that people are generally kind. I meet their eyes with a smile. I say that when you see Cooper having a hard time, you are seeing his hardest moment. Give us grace.”

What is so simple for other kids comes hard to Cooper, his mother says, but everything that goes well is a success most kids take for granted. Like how proud he was when he overcame his fear and got on a horse during his first therapeutic riding session.

Swenson hopes her book counters myths about autism she hears a lot, such as the belief that people with autism are cold and don’t show love. Her son, she says, is very loving.

Another myth is that people with autism can’t have a full life. That’s one Swenson really wants to explode.

“This is why I do what I do,” she says.

“I am honest with parents and say there is joy and there is good when you have a child with autism. So much of our lives is about how much money we make, getting bigger houses, what we achieve. So many of us measure success by that. Looking at Cooper’s successes is meaningful, even if he isn’t CEO of some company. He has surpassed everything painted about him in the beginning. He’s growing and thriving. Autism isn’t the end. It’s a new beginning.”

KATE SWENSON AT ST. PAUL SAINTS

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