I met Amy Silverman in real life when I was asked to "engage in conversation" with her at my local independent bookstore. I knew she was a journalist who had recently published a memoir called My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome. Parents of children with disabilities and special needs know one another because of the communities we have created, and I had seen Amy's work online, had friends who knew her and was otherwise familiar with her, but it was such a joy and honor to finally meet and then talk writing, books and -- well -- parenting a kid with special needs. In today's podcast, Jason and I got to pick Amy's brain on her new projects and what's been happening with her and her family since the book was published. Amy is funny -- so funny, in fact, that we laughed throughout the whole episode, and I think you'll very much enjoy joining us!
Amy is a freelance writer/editor/teacher in her hometown of Phoenix, Arizona, a place she's still learning to love. She's married to Ray Stern, an editor at Phoenix New Times, the alternative newsweekly. They have two children, Annabelle and Sophie. When Sophie was born, the couple were surprised to learn that she had Down Syndrome. As Amy said, "Wait a second, I have never written about Down syndrome. I have never met a person with Down syndrome. I don't know anything about people with intellectual disabilities. [I] had to have a real come-to-Jesus with myself, which is not easy for a Jewish girl, and realize that I was the one who avoided people with Down syndrome in the checkout line at Safeway."
In today's conversation, we spoke about the transitions our children face when their older siblings leave home for college, and that led to Amy telling us about her daughter Sophie's persistent questioning of her own place in the world. Amy also shared her evolution from a new mother who knew absolutely nothing about Down Syndrome and disability, to a woman who is unafraid to rock the proverbial boat, deal with the myriad systems, and advocate not just for her daughter but for other children and families.
We discussed how Amy moved from that initial paralyzed place to finishing and publishing a memoir, and how her experience as a journalist informed her. Her book weaves together research, science and personal narrative, and it is very much Sophie's story, but Amy points out that like her subsequent writing, she is equally as informed by the injustices she observes in the disability world, including how the education system has failed her daughter and many like her. "I didn't really set out to use Sophie as the main character in a story. But I found some sort of injustice going on. And nobody else was willing to have their personal story told."
Jason, Amy and I had a rousing discussion about the education system and particularly about the transition from the school system to the "adult" world. Amy says, "The beginning transitions are hard, every transition is hard. But this really is one that we will have to make up ourselves. And that's freeing and terrifying at the same time." We also spoke about our identities as caregivers, how these identities evolve and change, even as our children grow up and have different needs. What struck Jason was that "we all struggle with this in our own different ways, right? There's this idealized identity and idealized path. And then there's the reality." Amy continues to use her professional skills as a journalist to grapple with these issues, feeling a responsibility to make up for what she states as a "privileged" position -- someone who had no exposure to disability, despite a very socially conscious, liberal background.
She says, "and that is why, as a journalist, I felt like it was so important to me to share the experience of raising a child with Down syndrome with the rest of my world."
Favorite Purchase < $100
Paint brushes -- we buy Sophie paint brushes, even though she has so many, because it makes her happy.
The Giant's House: A Romance by Elizabeth McCracken
My Friend Isabelle by Eliza Woloson
Most Inspirational Group/Person
Joyce Ely from Ohio
People whom I've met on Facebook