Mary Lou Aguirre, The Fresno Bee, Calif.
Feb 03, 2009
Robert and Julie Rummel-Hudson have never heard their 9-year-old daughter Schuyler (pronounced sky-lar) call them 'mommy' or 'daddy.' At least, not in a language we recognize.
Instead, her parents know the sound "eh-ee" means daddy and "ah-ee" means mommy. Robert refers to his daughter's language as 'Schuylerese.'
Schuyler has bilateral perisylvian polymicrogyria, an extremely rare neurological disorder -- fewer than 100 people in the entire world have BPP.
The family's ordeal -- from not knowing the cause of Schuyler's developmental delays to receiving the diagnosis -- is captured with unflinching honesty in the book, Schuyler's Monster: A Father's Journey with his Wordless Daughter (St. Martin's Griffin, $14.95).
Robert, director of communications at the University of Texas at Arlington's School of Architecture, talked about Schuyler by phone.
"Schuyler is the most affectionate and socially outgoing kid that I have ever known," he says. "She has never gotten the concept of stranger danger. She is very trusting, huggy and kissy. I suspect that will change when she gets older. She runs at us with hugs that turn into a tackle. She doesn't hold anything back."
Robert doesn't hold much back, either. His book gives the reader insight into the highs and lows of having a special-needs child. Parents with special needs children will likely see themselves in Robert's story. It's a lesson for the rest of us, too. Don't assume that an out-of-control child is the product of poor parenting. The child may have a neurological condition.
The book covers the couple's finding out what was different about Schuyler. Emotions lay bare as Robert recounts the couple's reaction to meeting a specialist.
"We sat and we listened, and it all felt familiar somehow," he writes. "What I remember most [from other meetings] is feeling like something had been sucked out of me, leaving behind a void."
The doctor explained Schuyler's future: "I suspect she'll end up in the borderline or 'slow learner' range, which is defined as an IQ of 70 to 80, or possibly the mild retardation range, from 55 to 70."
Robert wrote: "We of course heard one word loud and clear -- the 'R' word." Julie asked, "She'll still be able to live independently, right?"
The doctor replied: "You need to be ready for the possibility that she's going to be under your care for the rest of her life." In the face of such devastating news, the couple continued to believe in Schuyler's abilities.
"I wish people could really pay attention to her," Robert says. "Schuyler is an extraordinary person who has a lot to offer." Their little girl likes techno music, dancing and reading.
Robert, who also blogs about his daughter at www.schuylersmonsterblog.com, says Schuyler communicates with an alternative and augmentative communication device, or AAC box, which allows her to 'speak' using a touch screen. It's a device previous special education administrators said was "too advanced" for Schuyler.
The couple disagreed.
"My advice to parents [of special- needs] children is to trust their instincts," Robert says. "As parents, we know our children. We share their lives, which teachers and doctors don't see. I would also say parents should take the time to understand Special Education law. A lot of school districts, whether unintentionally or not, aren't following the law."
The couple's insistence that Schuyler be treated respectfully and with compassion doesn't always occur.
This is a short version, but a woman once told Robert. "She acts like a wild animal. If you can't control your kid, you shouldn't take her out in public."
Robert explained Schuyler's neurological disorder. "She can't communicate like other kids," he said.
The woman said: "I don't care what's wrong with her. Maybe you should have her institutionalized if she can't do any better than that."
Robert leaned forward and told the woman: "I hope you get cancer."
"It was not my proudest moment and I considered leaving that story out," he says. "I have heard from parents who tell me they completely understand why it happened. I put it in the book as a reminder to me that it was a moment I took the low road."