Brooklyn resident Amber Grace wants the world to understand that no two children communicate alike, a message she shares in her book Whispers of Hope.
The self-published book is based on Grace's son Gio, who was diagnosed last year at age 2 with apraxia, a rare neurological condition that makes it difficult to speak.
Symptoms include difficulty verbalizing sounds, moving the tongue and lips at the right moment and saying the incorrect word for an object, according to the American-Speech-Language-Hearing Association. Noted celebrities who had apraxia during childhood include wrestler Ronda Rousey.
"It's not a regular speech delay," Grace said. "It's neurological and it's a movement problem. It's fixable and it's not forever."
Before the diagnosis, Grace spent a long, painful year trying to find out why her son was not talking or even babbling. Grace said her son was denied early intervention services by a private practice three times and had difficulty finding a speech therapist trained to work with apraxia.
Grace, a Bay Ridge resident, even met with a specialist online, who turned out to know very little about the condition. The year was like "hell on earth," Grace said.
But by August, her son was finally approved for early intervention services and is now able to see a private speech therapist in New Jersey, an hour's drive away, Grace said.
"That's why I decided to write a book," she said. "I was thinking, 'I'm not the only mom who's dealing with this.'"
Whispers of Hope is a picture book with every two lines rhyming together. The book is about Gio going to the park, and using an Augmentative and Alternate Communication (AAC) device and American Sign Language to communicate.
The book includes Grace, Gio's dad Nick Viera, and Vincent, Gio's 6-year-old brother. Vincent helps Gio with his speech therapy and tells kids at the park that his little brother is not ignoring them.
Marketing the book, currently sold on Amazon, has been mostly through word-of-mouth. Some speech therapists have bought copies for their clients and several parents of children with apraxia have bought the book by following her son's Instagram account, she said.
"There's been so much feedback and so many love the book," said Grace, who is currently marketing the book to colleges with speech pathology departments and some Brooklyn public schools.
Grace hopes her book will lead to some changes, like getting more speech therapists trained to work with apraxia patients. She said the condition should be treated as seriously as any other speech delay.
That said, Grace wants other parents of children with apraxia to gain strength by reading her book.
"When you're a parent, you'll be the best advocate for your child," because you'll be fighting constantly to get someone to believe you that something is wrong, she said.
"If nothing was wrong, I wouldn't be fighting," Grace said.
