Local writer is celebrating the debut of her new book, Better Than OK: Finding Joy as a Special Needs Parent, released October 8 from Our Sunday Visitor.
Kelly Mantoan has been married to her husband, Tony, for almost 20 years, and together they have five children ranging from 11 to 18. Her two youngest, Teddy and Fulton, have a degenerative, neuromuscular disease known as spinal muscular atrophy.
“I started sharing my story online through my blog, and a lot of people started reaching out to me with questions, so I decided to take my story and turn it into a book that showed how I moved through the healing process. It’s not only our story, but it’s a helpful guide to help other people dealing with the grief and feelings that come along with having a child diagnosed with a significant medical condition,” Mantoan said.
Mantoan said that her background is in photojournalism, but, shortly after graduation, she focused strictly on journalism.
“I wrote for some newspapers in upstate New York. I got married pretty quickly, had my daughter a year later and moved to freelancing. My oldest son is 13 months younger than my oldest daughter, so I quickly transitioned into being a full-time mom and stepped away from writing for a while,” Mantoan said.
Mantoan said that she started blogging in 2006, shortly after her middle daughter was born.
“I started with one blog, then I moved to this one in 2012 once my youngest was about a year—and sleeping through the night more. I’ve always been a writer, but certainly the blog I have now—”This Ain’t The Lyceum”—has really given me the platform. I’ve built up a lot of readers that have helped me work through my own things, and that encouraged me to write this book,” Mantoan said.
Mantoan said that Better Than OK: Finding Joy as a Special Needs Parent tells the story of how she went from “completely despairing, depressed and in danger of losing my Catholic faith.”
“My life is full of joy, and I’m so grateful for my sons, and they’re living a happy life. The book talks about how I and our family made that transition from being so overwhelmed with sadness to being a family filled with joy, giving very actionable steps for other people to follow,” Mantoan said.
Mantoan said that parents go through a grieving process when their children receive such a diagnosis, and the book addresses that.
“It walks through how I personally went through those steps, how I overcame them and how other people can, but how you can also persevere through other challenges that arise when you’re parenting a special-needs child, and how to do that, and how to find the joy and hope in every day when you’re dealing with something as challenging as a major medical diagnosis,” Mantoan said.
Mantoan said that the book is also helpful for those who may not have a special-needs child but know someone who does.
“They want to know how they can help. What can they do? That may be just a friend, or a family member or a pastor in a parish or in some sort of ministerial capacity and you’re dealing with a special-needs family. I talk about that. I talk about the right way to approach people: how to offer help, when to step back and realize they don’t need help right now, and realize it’s not about what you want to do for them; it’s about letting them say what they need, and then helping them,” Mantoan said.
Better Than OK: Finding Joy as a Special Needs Parent has a separate appendix that gives advice and ideas for how to help, Mantoan said.
“The whole book, in and of itself, really gives you a look inside what it’s like being a special-needs parent, so, really, you’re going to learn how to empathize with families. You’re going to have a whole other understanding, and that, I think, in and of itself, is valuable to people ... Even if you don’t have a special-needs child, some of the tools might be helpful to you as you navigate other upheavals in your life,” Mantoan said.
Mantoan said that she hopes that readers of Better Than OK: Finding Joy as a Special Needs Parent find it helpful.
“I had people tell me they wanted me to write a book and tell my story, and that was great, but I’m the type of person who really wants to help people. It’s nice to get my story out there, but I just hope that it is a helpful book to people, and it makes a difference. I hope it makes people look at families with disabled children or adults in a better, positive way,” Mantoan said.
Mantoan also said that it was important to note that neither she nor her sons want to be pitied because of the condition.
“I hope that this book raises people’s awareness of what it’s like to raise special-needs kids, realize that we’re not to be pitied. The life that we live is just full of joy, and it’s just like anyone else’s; our normal is different than your normal, but it’s still normal, and it’s good. Our life isn’t just OK; it’s better than OK. It’s a happy life,” Mantoan said.
Better Than OK: Finding Joy as a Special Needs Parent is available now. For more information, visit Mantoan’s blog at thisaintthelyceum.org. To learn about her ministry for special-needs parents, visit acceptingthegift.org.