Amy Silverman is a journalist and blogger I have long respected. We are kindred spirits in that we both write about our children who have Down syndrome for readers that include people who don’t. We have also both written books about our experiences.
First, congratulations on your book, My Heart Can’t Even Believe It A Story Of Science, Love and Down Syndrome! And second, what does Sophie think about the book? Does she go out on the road with you promoting the book? Is it exciting or does she think you’re a big nerd? Do you dress alike? Big thanks! I can’t wait to read yours. I’ve admired your work for years.
And YES, to answer your question, Sophie does think I’m a big nerd. (Of course she does, she’s a 13 year old girl!) She tells me all the time that I’m NOT allowed to sing or dance – either in public or anywhere near her. But I’m also her favorite. We cuddle a lot every day and she wishes we dressed alike every day. At night she tries to wear similar pajamas. In my favorite photo of the two of us, we are both wearing embroidered Mexican dresses.
As for the book, she enjoys the spotlight but not always the topic. She really struggles with not wanting to have Down syndrome.
I wonder at times if this where Thorin, my nine year old son, is at. He doesn’t want to talk about Down syndrome. For him, right now, it’s a private process. [It] started when she was 8 or so and it’s ebbed and flowed over the years. At the moment she seems okay with it – I really think the show “Born This Way” has helped with that, I have no other explanation. I think it’s helped her a lot to have her version of rock stars to love, to see them being celebrated.
I think there can be a disconnect with self-identity, like a young person who is LGBTQ. It's not a choice-- it's who you are. Do you think if there was acceptance for Down syndrome Sophie would still feel this way? I really struggle with that. My answer might change someday (or later today, ha! these things are such moving targets) but for now, no, I don't think an increase in acceptance will help. Sophie doesn't want to have Down syndrome because she sees how it limits her and I know that is a super unpopular thing to say but it's true. A lot of things are harder for her. Basic things. She can't reach the sink because Down syndrome makes her extra short. She can't be on pointe in ballet because her feet aren't strong enough. That's Down syndrome. (For her, anyway.) She does okay in school but I can feel her stretching and not quite getting to where she wants to be and that's Down syndrome holding her back. There's plenty about Down syndrome that is awesome and even more about Sophie that's awesome but I'd be lying if I said it didn't hold her back, and not just because the world isn't super accepting. It does and she knows it. She pushes back against it -- we all do, in our family. But some days Down syndrome pushes back hard. And that's tough.
Your career in journalism lends another kind of credibility to your writing. How much does journalism inform your writing about your family? SO MUCH. I do blog and that’s more just straight up memoir but this book really is journalism – a version of it, anyway. For me it’s been organic when it’s come to reporting about Sophie and Down syndrome, and I think that’s the best way. I work for an alternative newsweekly and we do “point of view” stories – report both sides but land on one. I feel like that’s much more genuine – there’s no such thing as a truly objective story. I’ve always found my stories in all sorts of places – from the check-out clerk at the grocery store, at a cocktail party. So I guess it made sense that Sophie would become a story, although I’d really never mixed personal and private before I had her. Here’s an example: When Sophie was ready for junior high, I started looking for just the right charter school. We’d found a perfect one for her older sister, so this would be easy, right? Wrong. Turns out, kids with special needs are regularly “pushed out” of charter schools in Arizona (and all over, I’d soon learn). I decided to write about the phenomenon and couldn’t find a parent willing to risk making school administrators mad. So I told our story and also did a lot of reporting about the big picture.
Everyone has intelligence but I love that you’re a writer who regularly refers to their child with Down syndrome as smart. Was it an effortless decision to write about Sophie as a person who possesses intelligence? Oh, that is such a good question. I actually had an existential crisis when Sophie was about 4 and she did not test as intellectually disabled (they called it mentally retarded back a decade ago). I had been writing about her as an intellectually disabled child, coming to terms with it and what it meant and castigating myself for being an asshole about such things and then all of a sudden someone said, “We’re removing that label!” Turns out it was because early intervention pole-vaulted her ahead of herself – it wasn’t permanent – but it made me think hard and look at her differently. Sophie IS smart. Yes, my 13-year-old’s math skills have surpassed mine – seriously. But she’s smart in much more important ways, too. She “gets” the world in a way I don’t, in a purer, no bullshit (or very little) way.
How much does Sophie’s experience have to do with that of another person with Down syndrome? Is Down syndrome on a spectrum? That is so hard. Yes, I believe Down syndrome is on a spectrum. In many ways, she is so similar, her experience is so similar, to that of others with Down syndrome. Including the physical. It’s so weird to look at a stranger and see your child’s face. It happens. And at the same time, every day she grows more unique. We all do, right? Sophie’s no different. But the expectation wasn’t there, that she’d be her own unique soul. She is, in spades.
We both have distinctive voices— and we use humor and swearing. Both of which make me love you. How does a writer find their voice? How has your writing changed over time? If you have to look for your voice, you’re screwed. I hate to say this but you’ve either got it or you don’t. Yes, you can get better with time and a shit-ton of hard work, of course. But an authentic voice is a gift.
What writers do you admire? Who did you read as a young person? I still admire the writers I read as a child – maybe more than anyone else. Louise Fitzhugh, E.B. White, Judy Blume, George Selden – I never did homework, I never paid attention in school, no one would pass me today. All I did was read.
Kari Wagner-Peck writes about parenting, home schooling and disability. She is a regular contributor at Huffington Post. She authors the blog a typical son. You can find her on Twitter @atypicalson. Her memoir Not Always Happy: An Unusual Parenting Journal will be published by Central Recovery Press in May, 2017.