A Mom Shares The Secret World Of Autism — And How It Transformed Her Life
MINNEAPOLIS — Cooper Swenson recently spent 30 minutes walking through Target — something his mother, Kate, once thought the 11-year-old might never do.
Shopping trips have long challenged Cooper, who was diagnosed with severe, non-speaking autism just before he turned 4. There’s riding in the car. Safely crossing the parking lot. Being patient. Being around loud noises and a lot of other people.
Cooper on foot in public can lead to behavior — running, throwing things, lying on the floor, screaming — that makes others stare. Not long ago, Kate’s best option was wrangling 100 pounds of blond, cherub-cheeked Cooper into a shopping cart.
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But she kept trying. Kate knew how important it was to help Cooper achieve his life-skill goals. Not only for him and their family, but for all parents whose children have been diagnosed with an autism spectrum disorder, 1 in 44 8-year-olds in the U.S., according to the Centers for Disease Control and Prevention.
Cooper has made big strides on his autism journey: He puts on his shoes, says several words, attends public school, and shopped at Target to pick out a sheaf of yellow paper.
Kate has come a long way, too, in the near-decade she’s publicly chronicled the fears, frustrations, joys and transformation spurred by parenting a child whose world differs from that of his neurotypical peers.
Kate’s heartfelt, candid narrations of her experience have drawn 900,000 followers to the social media accounts of her blog, Finding Cooper’s Voice. Her memoir, “Forever Boy,” to be released this month, lays the emotional turmoil of it bare: the confusion, loneliness and cruelties endured; the toll on her well-being; the toll on her marriage.
But Kate, 38, says that putting it all out there — saying the uncomfortable things that so often go unsaid — helped her find acceptance with a path that diverged from what she anticipated as a pregnant, naïve 20-something.
Autism’s arrival was “the beginning of a new life,” Kate says, and her attempts to stay her original course only led to more struggle. “I wish I would have stopped trying to force that round peg into a square hole and just started our new life together,” Kate reflected. “That’s when we really blossomed.”
As Cooper has come into his own, so has his mother, as she celebrates the beauty and meaning she finds in being “his person.” And the message she shares — of emotional honesty leading to personal growth — resonates far beyond autism to reach anyone for whom life has thrown a curveball.
Something was different
In the airy living room of her Twin Cities home, Kate looks just as she does in her casual vlogs, where she speaks to the camera as if animatedly chatting with a friend.
In person and online, Kate fluidly toggles between serious and silly. (Her tale of getting pulled over while hooked up to a breast pump would be stand-up gold.) Fans describe her as “relatable.”
Cooper is on the couch with a blanket and a couple of electronic tablets, including one that speaks the words he wants to say. His father, Jamie, and younger siblings come and go: the third-grader shows off his hockey glove; the preschooler needs help with a block dinosaur; the baby wants to nurse.
In some respects, the communication and behavior challenges surrounding Cooper’s disability seem immense. In others, his needs blend into the general chaos of life with four kids. For Kate and Jamie, an upset Cooper knocking over a display of framed photos is just another version of their pre-tween’s emotional outbursts, or 3-year-old’s leaps off the couch, or baby’s refusal to sleep.
Kate felt that something seemed different about Cooper as soon as he was born in Two Harbors, Minn. As a toddler, Cooper didn’t really play or engage, preferring to roam the house like a ghost. He suffered chronic ear infections and gastrointestinal issues, but without speech, he struggled to communicate his pain. His meltdowns were explosive.
After a series of inconclusive evaluations, Kate and Jamie took 3-year-old Cooper to a specialized autism center, where they were told his version of the disorder was severe and non-speaking. Kate’s frantic online searches led to disturbing videos of children screaming and flailing, and articles about children who grew dangerous and aggressive.
Before the diagnosis, Kate had started a blog to share how hard things were with Cooper with a few strangers. About four years ago, she made a Facebook page to connect with other parents of children with autism, who knew what she was going through.
Several posts went viral, including one about a parent berating Cooper and Kate at a playground and another in which Kate talked about her fears for Cooper’s future, which was featured on “The Today Show.”
Because children with autism are typically segregated from their peers and struggle to be in public places, their lives are less visible and their families can feel isolated. Through social media, parents could make the connections Kate had struggled to find.
“When we left Duluth, we joked that we had the only kid with autism in the whole city,” she said. “We couldn’t find anyone!”
Grief and growth
After the family moved to the Twin Cities, Kate became consumed with helping Cooper. If only she could crack the code — with more research, appointments, therapies, diets — maybe he would get better.
Her confusion was compounded when everyone in Cooper’s life, from family members to professionals, had their own perception of his circumstances. “Autism is so gray, and there are so many levels and differences in how it should be treated and helped,” Kate said. “I never could get anyone on the same page.”
Kate and Jamie’s differing responses to Cooper’s diagnosis began to drive them apart. Kate hopped on a rollercoaster of emotions and solution-seeking, as low-key Jamie turned inward. Feeling she was carrying the weight of autism alone, Kate initiated a divorce.
After a hard year apart, Kate and Jamie reconciled. As they have since remarried, added two more children, and remain happily paired, Kate could have skipped that difficult chapter in her memoir. But her recounting the private moments that fracture a marriage, and the ones that repair it, is among the book’s most powerful aspects.
Even with united parents, Cooper’s care required herculean stamina and vigilance. There were his crack-of-dawn wake-ups and tendency to wander (the one time their home wasn’t tightly locked, Kate found Cooper blissfully sitting in the street). Cooper’s quirks could be messy and destructive: stripping beds, plugging the toilet with paper, piling random stuff in the bathtub. As Cooper grew, his parents feared his physical aggression could threaten his siblings’ safety.
But with a lot of patience and effort, things eventually got easier. Cooper’s health issues were resolved. He got comfortable using the speech device. And he went on medication for his anxiety, which gave his body some peace.
A calmer Cooper spoke his first word (“Mom”), engaged more with his siblings, and could increasingly go out in public. He now loves school so much that he gets ready 30 minutes early.
Sharing stops stigma
In recent decades, society has become more accepting of diversity, including disability, said Amy Hewitt, director of the Institute on Community Integration at the University of Minnesota.
Efforts to identify children’s developmental delays at an early age have increased awareness of autism and contributed to the rise in its prevalence, Hewitt noted. Years ago, there was pressure not to label a child as having autism because of the negative stereotypes and limitations. Today, instead of trying to control certain behaviors, a more person-centered approach to support focuses on listening to the person with autism and observing what their actions communicate.
Part of society’s shift, Hewitt said, is due to people with disabilities and their families being open about their lives, and setting high expectations for participating in society. “For people with any disability, we expect you to work, we expect you to have friends, and to do things that people in the community do,” she said.
Kate could have kept her story close. But she’s found that sharing it has helped inform others and create valuable support networks.
About three years ago, her autism-related writing and social media also became her paying job. But her candid approach starkly contrasts that of the general Momternet, where influencers depict life as a beach, with hot hubby and cute kids as accessories. Instead, Kate peers into the darkness, writing, “Part of me wonders if Cooper should die a day before me. Can I say that? Am I allowed to?” But sharing her honest thoughts about what’s scary or tough, Kate says, is what bridged her to acceptance.
Kate hopes her videos of Cooper, whether he’s lining up chairs or practicing speaking, can educate the public about autism and improve how people with disabilities are treated.
That’s why she has continued to share her story online, despite some commenters shaming her for saying anything negative about autism, threatening to kidnap Cooper and wishing her dead. “I did not know that I could make people angry just by saying I’m sad that my son might never talk to me,” Kate said. “I didn’t even know what I was doing was controversial.”
Revealing the joy
While Kate views Cooper’s autism as both wonderful and challenging, she now focuses her Facebook page on his vibrancy. “I want people to see how joyful Cooper is, and how he has this full, purposeful life,” she said. She saves her fears and disappointments for a private Facebook group of subscribers who pay a few bucks a month to be a part of Coop’s Troops.
Subscriber Gina Schall, of Chaska, wishes she’d had such a group when her 17-year-old son was younger because she relies on it for information and judgment-free sharing. During the pandemic, Schall found the group’s accessibility vital. “If I go on there any time of day and just need to vent or cry or whatever, there’s going to be somebody there to respond and help you,” she said.
Amy Fields, of Farmington, began subscribing to the group after her family moved to Minnesota. She’s grateful for the real-life support members provided after her daughter became ill and passed away last year. “I had text messages, phone calls, the group did a fundraiser, groceries and food showed up at my door,” Fields explained.
Kate’s network of people with autism and their loved ones has given her the thing she once most wished she had: a crystal ball-view of what life might be like when Cooper was older, and a sense of reassurance. “I wanted a glimpse of Cooper at 15, or 20, or 30,” she said. “I just wanted to see him smiling and see him thriving — but see me thriving, as well.”
So she continues to broadcast Cooper’s achievements, no matter how small they seem. Even if she gets a “crickets” response, as when she posted about Cooper’s first use of a cup on her personal Facebook page. “No one knew what to say because they’re probably thinking, ‘That’s really sad. He’s 7 and he’s never drunk from a cup before,'” Kate recalled. “We need to celebrate these victories and show that we’re not ashamed.”
Kate hopes she can help reduce the stigma for anyone whose trajectory doesn’t fit our achievement-oriented culture’s script of college, career, marriage. “Cooper’s life matters just as much as anybody else’s life, even if he doesn’t do those things,” Kate said. “He’s still going to make his impact.”
Her message of learning to reconcile life’s difficulties, and reframing notions of success, has drawn followers outside the autism community who ended up with a different life than they envisioned for reasons as wide-ranging as a spouse’s affair and bankruptcy. Feeling supported, Kate noted, always helps with a perspective shift.
“Once I realized that this is going to be OK, and that we’re going to get through this, there really was this transformation,” Kate reflected. “And it made me a whole new person.”
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