New Haven Register: A father's story about a child with a rare brain malformation

By Jim Shelton, New Haven Register   
Thursday, March 20, 2008

IN WHAT SEEMS like the blink of an eye, 8-year-old Schuyler Hudson has gone from New Haven toddler to toast of the publishing world.

Her face graces nearly a full page in a recent People magazine; a month ago, she was in Good Housekeeping. Go to any major bookseller and there she'll be, thanks to the literary ministrations of her dad, former Elm City resident and big-time blogger Rob Rummel-Hudson.

Schuyler's Monster: A Father's Journey with His Wordless Daughter,  St. Martin's Press, $22.95, the book Rummel-Hudson wrote about Schuyler, debuted recently to positive reviews. It tells the story of how Schuyler was diagnosed with a rare brain malformation that left her unable to speak in complete words. It also recounts the emotional ramifications that diagnosis had for the family.

"Much of the first section of the book is devoted to our time in New Haven," says Rummel-Hudson in a phone interview from Texas, where the family moved in 2003. "New Haven played a huge part in our lives."

Rummel-Hudson and his wife, Julie, came to the Elm City in 2000, just weeks after Schuyler's birth. Rummel-Hudson had a job providing computer support for a program at the Yale University Medical School. The family lived for a time in an apartment on Whitney Avenue, then in a house on Howe Avenue.

Many of the trials and tribulations of Rummel-Hudson's daily life found their way to his online journal, which he's maintained under various titles since 1995. The New Haven Register included Rummel-Hudson's journal in a story about online diarists in April 2003.

By then, Schuyler's monster -- the name Rummel-Hudson gave to his daughter's condition -- had entered the picture.

The first indication came during Schuyler's 18-month check-up.

Her Yale pediatrician had asked, "So tell me, Mum and Dad. Does Schuyler have any words?" Rummel- Hudson writes. "Is she saying anything?"

She wasn't.

Two years of further inquiry followed. There was an incorrect diagnosis of an offshoot of autism, then eventually a correct diagnosis of bilateral perisylvian polymicrogyria, the brain malformation. Fewer than 1,000 cases of this neurological disorder have been reported since 1984.

On the home front, there was the full spectrum of emotion, including anger, depression and fear. Rummel-Hudson writes of the strain Schuyler's diagnosis put on his marriage, as well as his own frustrations.

"I felt I needed to include all the stumbles and the blemishes," Rummel-Hudson says. "I remember thinking, "If I don't fix this, there will be tragedy, and that's my responsibility as a father to prevent.'"

The family moved to Texas the week after Christmas 2003, to be nearer to relatives. Over the next few years, the family settled in the city of Plano, and Rummel- Hudson discovered a device online that could help Schuyler communicate. He affectionately calls it Schuyler's "Big Box of Words." It cost $7,500, which Rummel-Hudson financed through donations to his online journal.

Schuyler now attends a school that has a class for kids who use alternative or augmentative technology to communicate. She's a kid who loves dinosaurs, funky outfits and new adventures.

"She's always had this tenacious approach to knocking down problems," her dad says. "She's not a hesitant person at all. Even when we were struggling, the constant in our family was the forward motion Schuyler was always making. I'm really proud of her."

When Rummel-Hudson decided to write a book about these events, he reviewed nearly a decade of online entries.

"It gave me a sense of perspective, he says. "The thing I brought away was that, as a father, I could make mistakes or get things right, but in the end, it's all about letting (Schuyler) work out her own abilities and processes."

Meanwhile, he and Julie have gradually stepped into the role of advocates for families with special-needs children.

"I've met a lot of parents, cried with a lot of parents going through things that are similar," he says. "These are parents with more questions than answers."

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