A Caregiver’s Heart in Arizona

Amy Silverman’s recent memoir, MY HEART CAN’T EVEN BELIEVE IT, blends memoir and journalism to tell the story of Amy’s struggles to come to terms with a new role: caregiver for her daughter Sophie, who has Down Syndrome. This memoir’s sense of humor, even in the depths of helplessness and hopelessness that many caregivers experience, rings true. When we’re not crying, we’re laughing at what seems a new absurdity: the able-bodied, neurotypical world, both its expectations and insensitivities.

The Silverman Family

The Silverman Family

The first several chapters explore Silverman’s emotions during her pregnancy, subsequent labor and Sophie’s infancy. The bulk of the book, however, situates Sophie’s childhood among larger societal issues that affect the majority of children and young adults with disabilities: education, friendships, legal struggles, the arts and feminist ethical dilemmas. And, of course, MY HEART explores genetics and difference—the science of identity, which, for me and my family has opened new possibilities with our son’s treatment and care. Silverman’s explanations of scientifically complex material are refreshingly down-to-earth.

All of this contextualization came naturally to Silverman, as she’s a journalist herself, currently the Managing Editor at Phoenix New Times. Because Silverman blends the world of her family with the concerns of her professional life, I asked her questions based on her experiences as both a parent and journalist.

JS: I experienced your book as a memoir in essays covering modern genetics, ethics of abortion/disability, persons with DS as depicted in the arts, special education law, and the variety of issues related to inclusion, among others! Having finished this book, which topic or topics continue to resonate with you most? Any you'd like to explore further?

AS: I did try to cover a lot of ground! I can feel my interests both narrowing and expanding as things change at home. The topics that resonate with me now are the ones that bump up against our daily life, as Sophie grows up before my eyes. She is 13 and in eighth grade (the book ends just as she turns 12) and eager to grow up. I'm thinking more and more about what her life as an adult will be like, and how we can prepare for that. I'm also increasingly interested in how and why we write about children with special needs and others with disabilities. I do believe that it's important -- but only if done right. I hope I did Sophie justice in this book, and I'd love to incorporate her newly grown-up (and continuing to grow!) voice more into future work.

JS: Your book contains several chapters exploring the arts and disability, including your own concerns about disability representation. My able-bodied daughter and I have had several discussions about what books we'd like to see (or not see) in middle school and high school curricula depicting the experiences of persons with disabilities. As a parent, what's your take on this? What books would you like to see included?

AS: Sophie's older sister Annabelle and I discuss this a lot. Flowers for Algernon, for sure. It resonated with me when I read it as a kid, and again in much different (and I'll admit more profound) ways once I had a kid with an intellectual disability. So much there. There is current, wonderful YA literature that addresses disability and is aimed at an age where I think it can make a difference. Out of My Mind by Sharon Draper is one of my favorites. Wonder by R.J. Palacio is also so well-told. These books did not have to be about Down syndrome, per se, to resonate with me as Sophie's mom. Seeing the world through a different narrator's eyes is invaluable. I do feel as though if taught right, Roald Dahl tells amazing stories about how kids (and adults) adjust to being "other." A book doesn't have to be entirely politically correct to achieve a lot -- it's in the teaching. And the stories don't have to address disability head on, in every case. A mix of direct and indirect messages is my preference. But then again, I consider Harriet the Spy by Louise Fitzhugh to be very much about otherness in a profound way. (And one I relate to, to this day!)

JS: Women's and caregivers’ issues have been pushed to the front of the political agenda this presidential election cycle. I've noted Hillary Clinton's pledge to work on affordable childcare for working women. You briefly discuss your struggles in the book, and I've had my own experiences looking for inclusive daycare. The U.S. Justice Department has some regulations on this, but they're complicated. As both journalist and parent, how do you envision affordable daycare for parents with disabled children? What's reasonable? What's just?

AS: I'll be 100 percent honest here: I can't get past the guilt to give you a legit answer. Sophie receives state and federal benefits, including respite care, habilitation and various therapies. She also has a full time aide at school (right now, anyway). I'm completely convinced that without all that, neither of us would be thriving today. I feel terrible taking this handout. Not terrible enough that I don't take it -- and believe me, we supplement with a lot out of pocket -- but my honest answer is that I don't know. I don't know what's reasonable and just. It's all impossibly expensive and impossibly necessary.

JS: In chapter 13, you quote a long-term caregiver as saying, "That's my identity ... I'm just Tracy's sister. You know what, I don't want to be that anymore. I want to be me." That really resonated with me, as my son is 19 and we're facing transition from school issues soon. Even as we continue to care for our children in their adulthood, how do we maintain separate identities for each of us, parent and child? How do you envision Sophie's future and your own?

AS: I think about that a lot, particularly when Sophie finds her way into our bed and stretches her ever-growing limbs out and into my husband and me. I used to be outright terrified that Sophie would live with us forever but now (a good night's sleep aside) I can feel things tipping the other way. I've gotten accustomed to the assumption that she'll always be by my side. But more and more, Sophie talks about wanting her own independence. I can feel our world tilting. It's unsettling but good. I think it means we have done something right. The question is going to be how to take that abstract concept and make it work. Luckily we have a few years to figure that out. (Knock wood -- I'm very superstitious.) I do have a day job, have the whole time I've had kids, and a few projects on the side (not just writing about Sophie) so I feel pretty lucky to have my own identity. Busy, but lucky.

JS: In terms of writing the book, do you feel your voice as a parent differs from your voice as a journalist? If so, how did you manage blending them when you wrote the book? What was your break-through with developing the right voice and pitch for this memoir?

AS: These days there's a lot of first-person narrative in even the most traditional journalism; I find it creeping in everywhere. Back when I was coming up as a journalist, it was completely forbidden. No first person, ever. I had been a journalist for more than 15 years when I mentioned to my boss one night over drinks that I had heard about a family in metro Phoenix with three kids with Down syndrome. Sophie was 18 months old. "You should do that story," he told me. I protested, "I'm too close!" His response: "That's why you should do it." He was right, even though he was breaking his own rule. (An important thing I later learned as an editor: You have to know what the rules are to know when to break them.) The resulting story was a breakthrough for me, and I experimented with the form off and on for years before writing the proposal that led to the book -- and incorporated several pieces I'd done over the years.

JS: You've written about Sophie to many different audiences, in many different forms: as a parent conveying information to family members and friends, through blogging, through news articles and, now, a book. Many caregivers need to write about their experiences to communicate with others, blog or draft their own books and essays. What advice do you have for caregivers who are writing about their own children?

AS: Do it! Write it down. It's so important. That said, I stop and ask myself all the time why I'm writing about Sophie. Does it honor her? Is there a reason I'm sharing a detail? And not necessarily a reason with a specific, intended consequence (like ratting out the junior high for only letting the gifted kids take drama class) but maybe a reason like, people need to understand that even though she has an intellectual disability, my kid is pissed about the school dress code. In other words, details that make her a real life kid instead of a diagnosis on the page, a kid I would have wanted to meet before I had Sophie. There are all kinds of reasons, just make sure you have one. And consider your audience. You can write a whole lot of material that ends up in a drawer. In that case, let it rip (and keep it under lock and key). But if you're going to share it, figure out how to balance your honesty with consideration for your kid, for yourself, for your community. When you are writing in live time, it might not be a great idea to tell the world how peeved you are that your best friend's kid snubbed your kid.

Bottom line: Don't be afraid to express yourself. I feel like there are some well-meaning but militant disability advocates and academics out there who are squelching voices that need to be heard, even if what they have to say isn't always pretty.

And the most important thing of all, in my opinion: Be at least as hard on yourself as you are on any other character in the story.

JS: MY HEART CAN’T EVEN BELIEVE IT traces Sophie’s life from birth to age 12, and you can keep up with Sophie on Amy’s website.

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AuthorJeneva Stone