Today’s special guest is writer Joanne De Simone to chat about her upcoming memoir, Fall and Recovery: Raising Children with Disabilities through Lessons Learned in Dance.
Bio:
Joanne De Simone is a graduate of Hunter College with degrees in dance and special education. After dancing professionally with companies including José Limón and Dianne McIntyre, she dedicated her life to teaching children with disabilities and supporting families. Currently, Joanne is a special education advocate for the Alliance of Private Special Education Schools of North Jersey. Her writing has appeared in the Washington Post, Exceptional Parent Magazine, and the Rumpus, among other publications. She is a contributing author to “Barriers and Belonging: Personal Narratives of Disabilities.” Joanne and her son, Sebastian, were instrumental in a legislative change allowing students with intellectual disabilities to participate in NCAA D3 intercollegiate sports. Joanne has been featured in the Philadelphia Inquirer, on HuffPo Live, CNN, and GMA3. Visit www.Special-EducationMom.com for more information.
Welcome, Joanne. Please tell us about your current release.
In Fall and Recovery: Raising children with Disabilities through Lessons Learned in Dance, I delve into the transformative power of dance in navigating the challenges of parenting children with disabilities.
When the pediatrician placed the measuring tape around my infant’s head and noted, “His head is a little small,” I knew that motherhood wouldn’t be as I had dreamt. Even as a special educator, I wasn’t prepared to raise a child with a life-limiting brain malformation. Nor was I ready for the compounded pain and alienation that came when my second son was diagnosed with autism. But the struggle to balance my sons’ medical and educational challenges drove me to reconnect with the lessons I learned as a modern dancer – and there I found enlightenment.
Inspired by my experience performing José Limón’s “There Is a Time,” based on Ecclesiastes 3, each chapter of Fall and Recovery details a dance lesson and the dichotomy of parenting children with disabilities. Over time, I discover that surviving motherhood isn’t a matter of strength, bravery, or faith. It’s a matter of linking your past experiences and creating your own purpose. It’s realizing that we live simultaneously in love and grief. In the end, dance teaches me not only how to move freely through pain but also how to fall and recover.
What inspired you to write this book?
Several years ago, I gave some presentations about parenting children with disabilities to college students preparing to be special educators. The students were hungry to learn about the parent perspective and encouraged me to write a book. At first, I didn’t consider taking on such a tremendous project, but over time, I knew I had to share my story and encourage others to talk about their experiences. Fall and Recovery focuses on the conflicts I experienced because I felt that many parenting memoirs had a happily ever after ending, and I couldn’t relate to that. I wanted to write a book that admits that it doesn’t always end well, but this is how I live with it. I wrote one essay discussing the conflict I lived with: having a child who might die, doing everything I could to keep him alive, and being terrified about what happens to him if I die first. One parent wrote to me saying that for the first time she didn’t feel like a monster for having all of these same exact thoughts. It was a defining moment for me. It broke my heart that she was shaming herself for having what I considered normal thoughts in response to a stressful situation. So I decided the book would focus on the dichotomies I experience as a parent.
Excerpt from Fall and Recovery: Raising children with Disabilities through Lessons Learned in Dance:
Sometimes, after yet another obituary notice appears in my lissencephaly Facebook group, I walk around Benjamin’s room looking at his framed Raymond Briggs’s The Snowman poster, Beatles’ “Yellow Submarine” snow globe, and Where the Wild Things Are plush toys. I see Benjamin smiling at these things. I hear his laughter as John reads The Big Red Barn for the twelve billionth time. When Benjamin dies, will we leave his room frozen in time or pack everything away? Will I avoid his favorite song, “Sweet Baby James”? Will the words from Goodnight Moon torture me every evening when I lie in bed? Will I feel relieved or lost without the doctors’ appointments, the medication, feeding, and diaper schedules? How will I get through the day when Benjamin’s smile and laughter live only in my imagination? I’m not sure how parents move on after their kids die, but I’m terrified by stories of children like Benjamin celebrating their thirtieth birthdays.
Benjamin’s doctors don’t have crystal balls, and death goes unspoken. I won’t put them in the awkward position of attempting to slap an expiration date on Benjamin. As a teacher, I know how it feels to have a parent look me in the eyes and ask, “Will they be okay?” and have no reliable answer. After seventeen years, I worried less about Benjamin dying and more about him surviving beyond John and me. When we’re gone, who would look beyond Benjamin’s scars and see his brilliance?
What exciting project are you working on next?
At the moment, I am fulling enjoying the experience of launching my first book. However, I have started outlining a how-to book I would like to write about parent advocacy.
When did you first consider yourself a writer?
High school. I wrote a lot of poetry when I was in high school. That was definitely when I first considered myself as someone who relied on writing as a means to deal with my emotions and as a way to process difficult experiences.
Do you write full-time? If so, what’s your workday like? If not, what do you do other than write and how do you find time to write?
I am not a full-time writer. I am a full-time caregiver to my adult disabled son. I am also a special education parent advocate. At this point, I don’t have a set writing schedule. I’ll jot down ideas whenever they come to me or make voice memos if I can’t get to a computer or a pen and paper. When I want to really sit and work on something, I’ll get up extra early when I’m most likely to have time to myself.
What would you say is your interesting writing quirk?
I need to write in silence. When I was working on Fall and Recovery, I would get up early on the weekends while everyone else was sleeping. During the week, I would write late at night when my children were in bed.
As a child, what did you want to be when you grew up?
I honestly don’t remember focusing on anything specific, although I loved working with children from a young age. I started babysitting when I was 12. I was teaching gymnastics at 14. In high school, I wanted to be an accountant because I loved working with numbers, but during my college years, I decided to be a professional modern dancer.
Anything additional you want to share with the readers?
I worked on Fall and Recovery for 6 years. I spent another 6 years finding the right publisher to work with. I’m so excited to finally share this book and to spend time connecting with other families.
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