Kate Swenson’s almost 7-year-old son Cooper is autistic and non-verbal, so at first she felt dismayed when she saw the posting for TODAY and Jimmy Fallon's "Everything is Mama" contest. To celebrate the release of the Tonight Show host’s new children’s book, "Everything is Mama," TODAY Parents asked parents to share cute videos of their children saying “mama.”
“As a parent to a non-verbal child, I thought, great another thing we can’t do,” Swenson, 34 and a mom of two, told TODAY Parents. “But then I thought, wait, we can do something cute.” That’s when she had the idea to film Cooper speaking with his speech device that he uses to communicate.
The result was heart-warming, adorable — and won the contest.
Swenson said that when Cooper was first diagnosed with autism she felt extremely lonely and sad and had nowhere to turn, which led to the creation of her blog, Finding Cooper’s Voice, and accompanying Facebook page. “No one expects to have a child with autism,” she said. “It’s a confusing road. I want parents new to this journey to know that they should not give up hope.”
She also wants people to know that autism is not scary, it should not be kept secret and that children with autism “are just kids.” She firmly believes that parental involvement is the key to progress. “Cooper needs around-the-clock modeling (of behavior) and patience. My husband and I have devoted our life to him.” Even though Swenson works full time, and is also mom to 4 year-old Sawyer, who is a typically developing child, she stays very involved with Cooper’s therapy and feels lucky to live in an area where they have access to excellent services.
“Cooper yells at me all the time with his ‘talker’,” Swenson, a digital project manager for PBS in Minnesota, explained, saying that at first she was reluctant when Cooper's speech therapist suggested her son use a communication device. “I was scared that if he used it, he wouldn’t try to talk,” she said.
She also worried about the stigma attached to using an assistive device, but quickly found that the "talker" as she and her family call it, opened up a whole world of communication for Cooper. In the video she shared with the TODAY Parenting team, she sits at the kitchen table with Cooper and introduces him: "He loves trains. He's smart and he's funny and he's loving, and Cooper is also autistic and non-verbal ... I was told at a very young age that I should prepare to never hear Cooper's voice, and that's one of the hardest things I've ever had to expect."
"So we got one of these talking devices," Swenson continues. "And now — hey Cooper, what is mama's name?"
Cooper presses his tablet and a computerized voice says "mama." Swenson's face lights up.
He uses the Proloquo2Go system, on an iPad from Talk to Me Technologies; while most insurance plans don't cover the device, Swenson said Talk to Me offers grants and discounts to help with the cost. Swenson is also working with Cooper making sounds himself, and credits an intensive ABA (Applied Behavioral Analysis) school program with her son’s recent progress. “He really came out of his shell at 6,” she said.
Swenson won a trip to New York City to attend the book launch party of "Everything is Mama." It will be the first vacation for Swenson and her husband, Jamie, 39, an independent insurance agent, since their honeymoon — and their first time in New York City. Their family will be watching Cooper and Sawyer while they take their trip as a couple. “We’re going to do the touristy stuff, but I just can’t wait to sit in a restaurant and eat and relax!” she told TODAY. One thing’s for sure, it will be a well-deserved trip for this hard-working mama.