'Is he autistic or not? I'm not leaving here without an answer.'

An excerpt from Kate Swenson's 'Forever Boy: A Mother's Memoir of Autism and Finding Joy'

Forever Boy.
(Image credit: Illustrated | Park Row, iStock)

We were technically twenty minutes late for Cooper's ap­pointment. The one we had waited so long for.My husband Jamie had one job, to get us there on time. He had the clinic name, but what he didn't know was there were multiple locations. We were going north when we should have been going south. I knew it was a harmless mistake, but to me it felt like he didn't care. I needed more effort from him. I was livid, frantically dialing the phone to the intake line, begging the woman on the phone not to give our appointment away. She said they would wait fifteen minutes, but after that, the appointment would be canceled.

I had done all the prep work for the appointment, pages and pages of paperwork. Question after question asking if Cooper could drink from a cup, smile at a stranger, or pretend to feed a doll. I had to sign release forms and have records transferred. I made endless phone calls to our insurance company and to every place that had seen Cooper since birth. Other people in our fam­ily had to complete evaluations as well. It was all-consuming. Jamie didn't understand how easy he had it and what I had been through to get us to this point.

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Kate Swenson

Kate Swenson is the mother of four children, including eleven-year-old Cooper, who has severe nonverbal autism.  Over the last decade, she's built a huge community across her blog, Finding Cooper's Voice, Facebook, and Instagram, creating a safe space for families of children and teens with special needs to come together and laugh, cry, and support each other. In her memoir Forever Boy: A Mother's Memoir of Autism and Finding Joy, coming April 5, 2022, she shares her family's story, from the years-long path to diagnosis to the close bond her children now haveKate lives in Minnesota with her husband and their four children.