TROY — Troy father Roger Hines II recently published a book sharing insight from his life as a “CP dad.” Hines’ 17-year-old son Kolton lives with cerebral palsy as a result of Group B Strep spinal meningitis.
The book, titled “CPDAD: My Life as a Special Needs Parent,” is currently available on Amazon at a price of $17.99 for paperback and $2.99 for Kindle.
According to Hines, Kolton was a healthy baby throughout the entirety of his gestation, only to be diagnosed with the meningitis soon after birth. The resulting cerebral palsy has left Kolton with lifelong physical impairements.
“He needs an aide 24/7,” Hines said. “He relies on me for everything — his mobility, his G-tube feedings, all of his medications — and he is non-verbal. But he always has a smile on his face; this is his normal.”
Kolton has two brothers, including Kasan, who is 21, and Konnor, who is 15. Kolton is able to attend school full-time at Troy High school, where he is in his junior year.
“He’s in a one-classroom setting for special needs children,” Hines said. “They have four great aides there and the school goes out of their way to give him the best care possible. We couldn’t ask for it to be any better.”
Hines’ fiancé, and Kolton’s mother, Angie, works as an RN at a local hospital, leaving Hines to care for Kolton full-time while also working a side job soft-washing home exteriors.
“I chose to be Kolton’s full-time caregiver so that Angie can continue her work in the medical field,” he said.
Earlier this year, Hines said he began working on a book, which was released in September.
“What made me decide to write a book is that we’ve been through so much and in about 2017, I made a comment to Angie that I should just write a book about it all,” he said. “Two years went by and I’ve now spent the past nine months writing it.”
Hines said in writing a book, he hopes to be able to provide comfort and support to other families with special needs children.
“I figure our story can help a lot of other families out there like ours,” he said. “I put in some pointers about how Angie and I are successful at taking care of Kolton and how we work everyday and the things that we do.”
As someone with no prior knowledge of book-writing, Hines said he purchased an online program that provided training and steps to successfully completing a book. After he was finished writing, Hines sent the book to be edited before self-publishing.
One topic within the book, which Hines said he went into detail about, was that of communicating with his son.
“That’s a big chapter in my book. I think he understands the words that I’m saying to him. I hope he’s absorbing them, but without him being able to talk, we just don’t know,” he said. “We’re working with a communication device that works with eye gaze, but it’s a slow process. It picks up the retina of Kolton’s eye and he can focus on a picture or a word and it will choose that and command the word through the device. I hope one day Kolton picks up on it.”
Although Kolton is unable to communicate as of yet, Hines said the family simply enjoys spending time together doing things like swimming, watching movies, flying kites, and swinging thanks to the addition of handicap accessible swings at several local parks.
“We try to keep Kolton involved in everything,” Hines said. “We never want him to feel left out.”
Along with helping others who are in similar situations, Hines said he hopes his book can provide a unique insight into the lives of those who live with special needs, as well as their families.
“This is a book for everyone to read — parents of special needs children as well as families who do not have special needs children,” he said. “They need to know how families like mine live every day and what we go through and fight through on a daily basis. Our normal isn’t like other families’ normal.”
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