FRIDAY, 07 SEPTEMBER 2007
Everyone deserves to be heard. For 7-year-old Schuyler Rummel-Hudson, this is a challenge she must face every day of her life.
Even though she can’t talk, her story speaks volumes with the help of her father, architecture communication coordinator Robert Rummel-Hudson.
Schuyler was diagnosed with a neurological disorder in summer 2003. Bilateral Perisylvian Polymicrogyria is caused by a malformation of the brain. This disorder is her “monster,” as Rummel-Hudson describes in his book, Schuyler’s Monster: A Father’s Journey With His Wordless Daughter, which will be released Feb. 19.
Robert Rummel-Hudson first learned of his daughter’s disorder when she was unable to talk at age 2, he said.
“We started going through hearing tests and a bunch of different evaluations,” he said. “Finally we ended up with a neurologist and did an MRI.”
The MRI scans were sent to Dr. William Dobyns at the University of Chicago, where he made the original diagnosis, Rummel-Hudson said.
“He met with Schuyler about a year after that and was actually able to evaluate her firsthand,” he said. “When you talk to other parents whose kids have this, you refer to Dr. Dobyns as the Wizard of Oz. He’s sort of like the last place you go for all the answers.”
A blog originally written for fun quickly became a place where he described Schuyler’s condition as new information unfolded, he said.
“As we learned more and figured out that there was something wrong with her, I wrote about it at that time,” he said. “So when it came time to write the book, I had all this material that I had been writing in the moment. It almost seemed like I was taking notes for this book I didn’t even know that I was going to write.”
Kathy Williams, Schuyler’s second-grade teacher and augmentative alternative communication team leader at Gulledge Elementary School in Plano, said Schuyler uses a device consisting of several color-coordinated multi-meaning icons to communicate.
"Yellow buttons are pronouns, green buttons are verbs, and the pink bridge button leads to all the prepositions, and she pushes these buttons to form sentences,” she said. “She can use this device to communicate her wants, needs and the events of her life.”
Readers began following Schuyler’s story and got involved financially, he said. They funded Schuyler’s trip to meet with Dobyns. An online fundraiser set up by Rummel-Hudson paid for the electronic device Schuyler speaks through, costing about $10,000.
“There were people out there that really wanted to help her,” he said. “It took about five weeks to raise just shy of $10,000, and that opened my eyes to see how many people were actually reading about it.”
It was this that led Rummel-Hudson to tell his daughter’s story, he said.
“This is Schuyler’s story,” he said. “I’ve felt all along that I’m just taking dictation. I just want to do it justice. If I had written a novel and nobody liked it, that’s one thing, but this goes so far beyond me as a writer. If I drop the ball on this, then I feel like I’m dropping it for her, too.”
The book is about a family’s journey and how one sparkling individual had a profound effect on their lives, Schuyler’s mom, Julie Rummel-Hudson said.
Schuyler’s trials and tribulations while dealing with her “monster,” and Rummel-Hudson’s struggle to become the father that he needed to be for his daughter, fills the pages of his memoir, he said.
“In a lot of ways being her father has been about learning how to be her father, and she was the only person who could really teach me that,” he said. “It was hard because I didn’t feel like I was the right person for a child like this. It should be someone who really has their life together and that wasn’t me at all.”
Through his book, Rummel-Hudson hopes to reach out not only to parents of children who have this disorder, but to everyone willing to listen to Schuyler’s inspiring story, he said.
“Schuyler is very excited about the book,” he said. “If you ask her what the book is about, she’ll point to herself. It will change her life.”