'Chasing the Rabbit' is an extremely honest and real account of fathering a child with Asperger's, a neurological and developmental disorder, in unflinching detail.
MIAMI – Maine businessman Derek Volk is Dylan Volk's father. After years of misdiagnosis, struggling to understand his son's behavior and challenges, Dylan, now 25, was finally diagnosed at age eight with Asperger's Syndrome on the Autism spectrum.
Derek authored a book, 'Chasing the Rabbit: A Dad's Life Raising a Son on the Spectrum' with his son's input.
The book is an extremely honest and real account of fathering a child with Asperger's, a neurological and developmental disorder, in unflinching detail. Dylan adds his own insights within the chapters of the book describing his personal experiences and feelings.
“When we got the diagnosis, for us it was kind of a relief. We didn’t really know what it was going to mean long term,” Derek said in an interview this week. “There wasn’t a lot of knowledge about it. It had only been a diagnosis a few years at that point and there was very little information about it.”
The Northeast Oklahoma Tribal CCDF (Child Care & Development Fund) Program is sponsoring a training workshop and presentation from 6:30 p.m. to 8:30 p.m. on Monday, March 5 at the Coleman Theatre at 103 North Main Street in Miami featuring Derek and Dylan Volk.
The two-hour training is free and open to the public. Anyone needing training hours is asked to register online at www.ottawatribe.org under Tribal Services – Child Care.
The Volks revealing book offers a view only seen by those on the inside of life with a child with such a diagnosis, and it’s a nothing’s held back account.
Quest for answers
After years of frustration and seeking help for their son’s unusual behavior, a breaking point came for Derek and Amy Volk, Dylan’s mother, now a state Senator in Maine, when Dylan was kicked out of a summer camp and labeled a “monster” by the professionals supposedly there to help him.
“I will never forget that moment because it was the first time that somebody attacked Dylan for what he could not control – behaviors that were as frustrating to him as they were to anybody else,” Derek wrote in ‘Chasing the Rabbit.’ “As we were later to experience time and time again, the professionals that we counted on to help us with our son did not have any answers that were really helpful at all.”
“It was at that point we realized there’s something more than just something’s not right with Dylan, that we had a problem here,” Derek said. “I think at that moment we realized we had an interesting road ahead. There were some really scary times.”
One therapist even told the Volks their son was incapable of feeling love, or possibly a sociopath, this huge misunderstanding of Asperger’s at the time was vastly daunting for the family desperately seeking answers and help for Dylan.
“Most of the people with Asperger’s have very deep emotions, they just don’t know how to express them really,” Derek said.
Derek and his wife never gave up searching for understanding, a realistic diagnosis or ways to help Dylan function and make his way in school, relationships and into adult life.
Derek wrote in his book, “He is disabled, period. He is less able to perform normal life functions and live peacefully and successfully in society than the average person.”
“Still to this day, it’s a constant challenge to figure out how to get him through life. A lot of times people will say to me, ‘I could never do what you guys did.’ You know what, you’d be surprised what you can do when it’s your kid,” Derek said. “You deal with what you're dealt, and you have to figure out what you can make of that situation. I honestly feel that everything we’ve gone through with Dylan is because this book was supposed to happen. This book was part of God’s master plan because it’s been an amazing experience for the last three years now.”
“I was given some very good advice. I was told I had to mourn the son I thought I would have before I could truly love the son that God gave me,” Derek wrote.
Sharing their story
The book is widely successful and has led Derek and Dylan across the country speaking on Asperger’s and Autism, sharing their story with thousands of people.
“The most common things that I hear are how the book made other parents feel like they weren’t alone,” Derek said. “So many people feel like they’re all alone in this, because it’s not something, especially with Dylan, that people even recognize. Sometimes you’re in a restaurant, and the waitress doesn’t know, and you can’t sit there and explain. It’s a hidden disability and it becomes very hard for parents.”
One tool Derek uses to help explain and educate others is a printed card he hands to those they encounter who may not understand Dylan’s behavior. The card was inspired by rants Derek read on Facebook over an encounter with a child acting out in a restaurant and he felt the need to respond.
Derek explained, “It has a picture of the book on the front, and on the back, it says, in big blue letters, ‘You are witnessing Autism. Please be patient with my child he/she has Autism. What may look like poor parenting is a child with a neurological disorder just trying to get through another day in a world that is often very confusing, fast-paced, and overwhelming. Thank you for understanding.’”
Typical of many diagnosed with Asperger’s, as a child and teenager Dylan had what his father calls “passionate obsessions” at different stages with birds, Star Wars, and cars. Dylan learned everything he could and loved sharing his knowledge with others. An enigmatic aspect of the neurological disorder in some cases is great intelligence mixed with a lack of what are considered typical social skills.
As an adult Dylan turned to an obsession and interest in comedy, creating witty and entertaining and sometimes edgy videos and performing stand up. He now lives and works in Austin, Texas.
Derek described the father and son’s speaking presentation offered here in Miami Monday night.
“I think they’re going to hear, similar to what’s in the book, we won’t hold anything back in the presentation either. Dylan’s part of the presentation is fascinating and it’s constantly changing, I never know what he’s going to say.” Derek said laughing. “ He’s like a rock star at these conferences because he has all the emotions that people with Autism have but he can explain them in ways that most people can’t. He see’s the world in a most interesting way. He’s going to be sharing more, because he has a sequel to the book coming out.”
Dylan’s new book will chronicle his life from his perspective forward from where Derek and Dylan’s first book ended. Dylan’s faced many new challenges he writes about in his latest book.
“It’s a tough read. It’s hard to read because some of it is very sad, because it’s about how he sees his life and sees the world, and he basically tells us all the things he’s never told us,” Derek said.
Being able to share your life experience is one thing, but being willing to be so real and open takes another level of bravery and vulnerability obvious in the Volks’ breathtakingly truthful autobiography.
“To be honest, the reason my book is so raw is because I honestly thought no one was going to read it,” Derek said. “ I thought as soon as I told Dylan that I did it, I thought he was going to say, ‘There’s no way you’re telling everybody,’ and if he didn’t shoot it down, I thought my wife was going to say, ‘You can’t do this.’ Both Dylan and Amy were incredibly supportive. But when Dylan wrote his book, he wrote it knowing everybody was going to read this.”
The book’s and the Volks’ reception and importance to other families have been a surprise to the Volk family.
“It’s been overwhelming because I never thought the book was going to have such an impact on people,” Derek said. “I don’t regret any of it for a second. It was a big decision, and at first, it was awkward. We’ve done over 100 presentations so it’s not so awkward anymore, but I still get choked up during some of the presentations…but it’s probably the best thing I’ve ever done in my life. You know I make boxes for a living. I have a corrugated box company. If I died and they say, ‘You know, he made a lot of boxes,’ I’d be very disappointed if that was my legacy. So, I think this book is hopefully going to outlast me, and the impact that it’s going to have, I know is going to outlast me. I get messages all the time how it has changed families and the way people see the world, and their role as a parent. That’s just such an amazing and powerful blessing.”
Volk hopes to teach more compassion and understanding, a valuable lesson for all during his Miami presentation and hopes to spend time exploring the northeast Oklahoma area with Dylan before their appearance.
“We’re excited to come to Oklahoma. I’ve never been” Derek said.
For more information about the Volks or their book go to www.chasingtherabbit.org
Melinda Stotts is the associate editor of the Miami News-Record. She can be emailed at email@example.com or followed on Twitter @MelindaStotts1.