By ANNETTE NEVINS / Special Contributor to The Dallas Morning NewsSunday, March 9, 2008
When Schuyler touches a button on a small machine she carries with her, it roars.
Schuyler, pronounced Sky-ler, doesn't communicate the way most children do. She can make sounds but can't enunciate consonants or use her mouth to form complete words. But that hasn't stopped her from finding her voice.
Schuyler was born with a rare brain malformation known as bilateral perisylvian polymicrogyria, which prevents her from being able to talk.
Her parents, Julie and Rob Rummel-Hudson, endured numerous doctor visits and frustration before finally finding a name for what Mr. Rummel-Hudson refers to as Schuyler's monster.
Mr. Rummel-Hudson, a communications coordinator in the UT Arlington School of Architecture, chronicled the family's journey in a recently released book. In it, he writes about how the stress of caring for a child with a disability challenged him personally, tested his marriage and ultimately strengthened his family.
"The book is a love letter to my daughter," said Mr. Rummel-Hudson, who has blogged about Schuyler since before she was born. "Someday she may read it and write a rebuttal," he joked.
"Flat Stanley can go under doors," said 8-year-old Kayla Stevens-Schmit.
Schuyler's hair is tinted red and styled as a short bob framing her large green eyes and round cheeks. She touched several onscreen keys to form a sentence on the machine that she carries like a purse, her "box of words."
"Peter can fly," a female electronic voice chimed in.
Her classmates took turns guessing what she meant. Schuyler folded her arms across her chest and tucked her head into her chin.
Camryn Evans, 8, came to the rescue, giving Schuyler a pink and purple eraser shaped like a cellphone. Schuyler held it to her ear and began to sign with her hands.
"I know Schuyler's language easy," Camryn said, coaxing her to punch more buttons. "She's talking about Peter Pan."
The search for Schuyler's monster began when she was 18 months old. Schuyler squirmed through numerous evaluations, all sparked by a question from her Yale University pediatrician about why she wasn't talking at her age.
Her condition, a brain malformation that can be seen on MRI scans but is hard to detect, paralyzes the tongue and slows motor skills. It also can cause seizures. The disability, thought to be genetic, is extremely uncommon – fewer than 1,000 cases have been reported since 1984.
As in his book, Mr. Rummel-Hudson has employed his personal blog to express feelings about the challenges he has faced and how the experience has taught him to be a better father.
"In my dreams, Schuyler talks to me, telling me that things are going to be okay," Mr. Rummel-Hudson wrote in a recent blog entry. "I think she means more than just her own monster battle."
Schuyler's "box of words" is a $7,500 voice machine paid for by donations made through Mr. Rummel-Hudson's Web site, including many from people who knew Schuyler only from his blog, he said.
She's enrolled in a unique program offered through the Plano school district, where 11 children with varying degrees of speech disorders split their time between a regular classroom and one equipped with advanced speech technology.
It's one of only a few programs of its kind in the nation that serve children with disorders that rob speech, including autism and cerebral palsy.
Every child is given a voice machine to help them participate in the program, launched when Schuyler was entering kindergarten. The program is designed to follow the children through high school, school officials said.
Teachers Linda Conerly and Kathy Williams immediately fell in love with Schuyler, snapping pictures of her and a classmate sharing girl talk between their voice machines.
"She is a happy child of joy who has lots of friends, and we all love her," Ms. Conerly said.
Her parents are happy that Schuyler is finally getting a peer group and enthusiastic teachers – a luxury they say she did not have before. She even rides the bus to school.
"This little girl who cannot speak is teaching us about persistence, commitment and compassion," teacher Kathy Tripp said. "That's more than any word can express."
Schuyler touched a button on her small machine, and it roared.
To learn more
Rob Rummel-Hudson's book is titled Schuyler's Monster: A Father's Journey with His Wordless Daughter, and is available at major booksellers, including amazon.com and Barnes & Noble. For more information about the book, visit www.schuylersmonster.com.
Plano girl learns to live with disability - Robert Rummel-Hudson, author of Schuyler's Monster: A Father's Journey with His Wordless Daughter, finds hope and strength as he watches his daughter grow and overcome her disability, caused by a rare brain malformation. (DMN - Video/editing: Cheryl Diaz Meyer)