We’re excited to introduce you to the always interesting and insightful Joanne De Simone. We hope you’ll enjoy our conversation with Joanne below.
Joanne, appreciate you joining us today. We’d love to hear about a project that you’ve worked on that’s meant a lot to you.
Fifteen years ago, my husband and I decided to move our family to New Jersey in order to accommodate our sons’ educational needs. While that was a tremendous undertaking, I didn’t realize that I was about to start one of the most meaningful and intensive projects of my life. At the time, I was a special education teacher. I thought I had extinguished all my artistic desires when I left my life as a professional modern dancer. After years of people telling me that I should write a book, I decided it was time to take their suggestion to heart and reawaken my creative being.
In the process of writing my memoir, I relived the many difficult experiences a parent has when raising children with disabilities, but it was so helpful to examine those periods of my life from a new and distant perspective. I came to appreciate how fortunate I was to have such an open and communicative family. I grew up in a home where you could talk about anything. No conversation was taboo, so I never felt the need to hide my true feelings. I wasn’t conditioned to believe that dark thoughts were something to be ashamed of. I felt safe sharing my feelings and trusted they would be validated. I have and always will cherish the connection I have with my family. Ultimately, I believe this allowed me to write freely. My husband was also extremely supportive from the start.
With all of their support, I was able to create something that exceeded my expectations. Fall and Recovery: Raising Children with Disabilities through Lessons Learned in Dance will be published in August 2024. I truly hope it will help other parents and will serve as an important tool for teachers, therapists, and health care providers.
Great, appreciate you sharing that with us. Before we ask you to share more of your insights, can you take a moment to introduce yourself and how you got to where you are today to our readers.
In addition to writing, I work as a special education advocate for the Alliance of Private Special Education Schools of North Jersey. As a former special educator and parent of two children with disabilities, I have a well-rounded perspective. I discuss the joys and challenges of parenting on my blog, Special-EducationMom.com. Every part of my life is steeped in the world of special education, disability, and advocacy.
I had very little writing experience when I started working on my memoir. In my teenage years, I wrote a lot of poetry, but I never wrote longer forms of narrative nonfiction. I was incredibly uncertain about taking on such a huge project, but a friend convinced me that I had an important story to tell filled with experience and a perspective that could truly help others. So, I made a commitment to sit down and write a minimum of one page every day. After I had a first draft completed, I found a local writing program and spent the next several years revising the manuscript and working on essays for a variety of publications.
One essay detailed a common concern among parents with disabled children. What will happen to my child when I die? The piece went viral. I learned the power of the written word when one reader commented. “For the first time, I do not feel like a monster for having all of these same exact thoughts.” Up until that moment, it hadn’t dawned on me that other parents were so accustomed to hiding their feelings. I was driven to finish Fall and Recovery for my fellow special needs parents because no one living my kind of life should feel alone in their thoughts and their pain.
Helping parents resolve strong feelings of loneliness and giving them the tools to advocate for their own children is something I am immensely proud of. Combined, my writing and advocacy work are a perfect way to continue supporting other parents.
Can you tell us about a time you’ve had to pivot?
When my first son was born, I was a full-time preschool special education teacher. At four months old, Benjamin was diagnosed with a rare, life-limiting brain malformation. At seven months old, he acquired a very dangerous type of seizure disorder. At that time, the average life span for a child with his condition was two years. In order to manage his medical needs and spend as much time with my son as possible, I left work to be a full-time mom. I honestly didn’t know if I’d ever teach again, but two years later, Benjamin started a half-day preschool program, and I shifted to working with children from birth to three years old as an early intervention teacher. I only worked when Benjamin was in school.
I had experienced the world of early intervention as a parent. Teachers, physical, occupational, and speech therapists came to my home to work directly with Benjamin. It’s a very different model than that of a classroom teacher. As a parent, I knew it could feel both supportive and intrusive. It was important to me that as an early intervention provider, parents saw me as a support.
While I loved working directly with young children, I also discovered how much I enjoyed working with their parents. It’s such an honor to listen to their stories and share my own strategies for managing the world of special education. I feel very fortunate that I am still able to support families directly as an advocate and through my writing.
Is there a particular goal or mission driving your creative journey?
I am one hundred percent driven by the thought of parents out there who are overwhelmed by raising children with disabilities in a world that is not always welcoming. As a parent, it is crushing to watch your child struggle to find a sense of belonging. I also found it difficult, at times, to manage the special education system, even though I was a special educator. Many parents don’t have the benefit of a master’s degree and in-depth knowledge of special education laws.
In everything I do, I want to give parents a solid base of knowledge and a more secure belief in themselves. My goal is to give parents the strength to do the things they need to but have grown too weary to do. Different systems beat you down. Whether it’s dealing with the medical and educational systems or any other large, uncontrollable entity, we all just need a little reminder that we are not alone. We are absolutely capable.
Parenting comes with so many moments of joy but also uncertainty, grief, and guilt. The big lesson for me in the process of writing Fall and Recovery was learning to appreciate and find connections to everything I’d done in the past, even if those experiences seemed unrelated. Investigating the lessons I’d learned as a professional modern dancer and applying them to motherhood not only gave me new coping strategies, it gave me a renewed sense of accomplishment. I loved my time as a dancer, and I’m thrilled to have found a greater passion for my work in special education. However, there were times I thought about dance and wondered if chasing that dream was a waste of time. The truth is, dance taught me that everything connects through space and time. To me, success is a matter of understanding how to link our experiences and use our collective knowledge to move forward with purpose. I believe that transforming my dance muse into a writing muse has allowed me to do just that.
Contact Info:
- Website: https://special-educationmom.com
- Instagram: @jojdesimone
- Facebook: https://www.facebook.com/profile.php?id=100063572109629
- Linkedin: https://www.linkedin.com/in/joanne-de-simone-b47b2015/
- Twitter: @jojdesimone
Image Credits
Credit for first image…headshot: Art by Corie