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"finding cooper's voice" is a popular blog in the united states. the son of blogger kate swenson, cooper, suffers from severe autism. as a mother, she gives endless love to her child and records cooper's growth in her blog. at the same time, kate swenson also actively helps other parents of autistic children through this blog and writes their touching stories. "finding cooper's voice: a mother's memories of her autistic son" is kate swenson's confession. she shares her life journey with sincere and empathetic words. this article is authorized by the publisher and is excerpted from the recently published chinese version of the book. it is a "special chapter" in the appendix at the end of the book. the original title was "hearing cooper's voice", and the current title is proposed by the editor.

kate swainson and son cooper

"kate, you really cover everything in this book."

this is what my husband jamie said to me about three months after the book was written. my friends in the circle finished reading the book within a few days of receiving it, but jamie, even listening to the book at 1.5 times the speed, took a full three months to listen to my original reading. and he had to sign a disclaimer before the book could be published. this part was really interesting.

whenever i got in his car, i would be tortured by the sound coming from the stereo, and i would end up turning it off. there was nothing worse than hearing my own voice. as the book launch date approached, i reminded him that he would likely have questions, hoping to urge him to finish the book. an hour before the event, he told me that he had finished the memoir. i was excited to hear his thoughts and even ready to discuss it with him. this was not just my story or cooper's story, but my story with him. would he talk about that night in vegas? would he talk about the emotions i was experiencing during my divorce?

but he actually asked, “whose bed did you wake up in?” i couldn’t help but laugh. he had been listening to me pour out my heart for three months, and this was his first question and his biggest impression. he only captured one sentence about my single life in the book.

sharing your life and your emotions, especially out loud, is a brave act. at least that's what i told myself when i wrote this book. my goal was really simple: i wanted to help other moms feel less alone than i did when i started my journey. i believe my book can do that. my story started out as an answer to a few questions, but what happened next was so much more.

parents of adult children with disabilities shared how the book helped them heal all the parts of themselves that they couldn’t admit at first. parents of newly diagnosed children told me they felt like they were finally being seen. teachers, nurses, and therapists said the book made them better at their jobs. a sibling of a young person with a disability told me, “now i understand what my mom went through. i didn’t know that before.” a friend cried and told me that the book had spoken words she hadn’t been able to, and that she had reconnected with her father. another woman said, “kate, you’ve made it possible for me to share my life without feeling sorry for it. thank you.”

i love helping mothers who are dealing with this unique grief because i have been there too, and i always will. i know their fears, i know their struggles. i have sat in the dark with them, we have laid on different bathroom floors wondering, “why my child?” we have climbed the same mountains, and there is something beautiful about having the same scars. it brings us together, a bond that is both unspoken and unquestionable. we wear our armor with pride, and our desire to help is the biggest thing that changes us.

i soon realized that this book—our story—was helping others and helping me find my own purpose. in 2021, my business partner amanda and i founded a nonprofit called the more than project to help struggling caregivers. each year, we host multiple one-on-one retreats for women caregivers that many participants describe as “life-changing.”

i started a one-on-one support group for parents to learn, share, and connect. this way, families like ours meet privately every month. no one would even look up if cooper’s swim trunks flew off the water slide. i give public speeches, sharing our story and the lessons of adversity and hope. my social media account, finding cooper’s voice, has a million followers. i know this may not be a big deal in the real world. but years ago, when my family couldn’t go to church, the park, or even school, i had an irrational but reasonable fear: i was afraid that no one would recognize my son, and i felt like we were becoming invisible. but cooper has proved me wrong, because my child is changing the world, and he has done it simply by being himself.

i never thought i’d write a book, and becoming an author wasn’t on my bucket list. so when i signed a book publishing contract with a new york city publisher on a friday in march 2020, i felt more fear than excitement. people often ask me if i’ve enjoyed my journey to publication, and my answer is no.

i guess they pictured me sipping coffee by the fireplace while writing my memoirs. but that was anything but, because two days after i signed the contract, the world shut down due to a global pandemic. work went virtual, school went virtual, and our daycare shut down. cooper’s therapy program was shut down—something i never expected. the loneliness that every special needs family has long known was now a reality for everyone. it was a terrifying time for families with children with disabilities. the few services and supports that our family had were wiped out. while sawyer was still able to ride his bike, learn online, and video chat with friends, cooper could do nothing.

i tried my best to stay positive for my family, but sometimes it felt like cooper was disappearing before my eyes. his decline was undeniable. a few months into the pandemic, it dawned on me that cooper, who had spoken his first word at age eight and knew 30 words before the pandemic, had now forgotten all but two of his words.

notice that the boy who was told he would probably never speak already knows thirty words: home, daddy, paper, sawyer, harper, cookie, stop, more, and help. he had worked so hard for those thirty words: countless hours of speech therapy, practicing with his mom, working harder than any child could ever do. every word was a cause for celebration and cheer. when he reached the thirtieth, i told myself: i don’t care if he learns one more word, because i’m already so proud of him. thirty is enough. and then, poof, all the words disappeared, except for two: mommy and snack.

those two words would come up a few times a day, but the rest were gone. this was regression. he had lost the services and support and the life he had previously thrived in. i told myself every day that he would be able to say it again. on the outside, i looked confident; but deep down, i had no idea.

cooper likes to immerse himself in his own world

suddenly, i found myself writing 60,000 words in six months at home, with my family outside and a son who was disappearing. i remember having many arguments with jamie. at one point, he yelled, "just write!" and i yelled back, "i'm not inspired!" his insurance broker mind thought writing was as easy as quoting. but it wasn't. i needed quiet and time to unravel those difficult emotions. my sons, naked, pressed against the glass door of the study, demanding that i open their dried fruit snacks for them. i didn't want to be disturbed, but that's how motherhood works.

we have slowly adjusted to our new life after the pandemic, and just one year after finding cooper’s voice was published, life has had its share of surprises. i got pregnant again at age 38, which is medically known as “advanced pregnancy.” let’s just say having a baby during the pandemic was… interesting. our newest addition—a girl—was born on may 25, 2021. her hair was as white as snow, so we named her wynter. i never thought i could have a daughter. after having three sons, i thought our family was complete, and i never thought about having another daughter. when the nurse on the other end of the phone informed me of the results, i was sure i would hear the word “boy” for the fourth and last time. instead, she screamed with excitement and shared the unexpected good news. i was shocked, excited, and a little scared—it was a girl. sawyer and harper immediately fell in love with their little sister. cooper, like most things in life, took her time and took her time. the day after we got home, i sent pictures of my daughter to cooper and sawyer's teachers so they could show off their new baby sister to their classmates. i knew cooper probably didn't care, but i wanted to do it anyway. the feedback from his teachers was exactly what i needed to know that this was going to work out.

"congratulations to your family! she's perfect."

i just showed this picture to cooper and he gasped and then one classmate after another asked him to come look at it. he's a proud brother.

in the days that followed, cooper surprised us in yet another way. he began to communicate with us using characters from his favorite tv shows. he showed dora and boots hitting home runs on baseball day, and making giant monster noises when they were angry. there was also an episode of peppa pig, where peppa's little brother george cried when he was sad, and barney sang "i love you" to show his love. we never expected cooper to sing along - it was the best gift, no doubt.

"finding cooper's voice: a mother's memories of her autistic son", by kate swenson, translated by wang chang, yilin press, may 2024 edition