Outgoing girl with cerebral palsy finally finds her voice
GREAT FALLS, MT - Katie Hill is remarkable in the same ways that thousands of other 11-year-old girls are.
She likes to giggle, laughing at the silly things the kids in Leia Lins’ fifth-grade class at Morningside sometimes come up with. She loves reading — math, not so much. Katie is a talented writer and comes up with funny stories about haunted houses and meeting up with space aliens. She likes to swim and ski, is learning to play drums and the piano, and if it were permitted, she’d probably eat all her meals served with a large side of ranch dressing.
At the end of the long list of the things that make Katie the remarkable young lady she is, there remains her “hard thing,” as Katie’s mother describes it. Katie is one of the approximately 500,000 adults and children in the United States living with cerebral palsy, and though the neurological disorder undoubtedly complicates her life, it does not define who she is.
“What we talk about with her often is that everybody has hard things,” Elizabeth Hill said of her daughter’s affliction. “We all have hard things in our lives. She’s had friends who have lost their parents. I have friends who suffer with debilitating disease. That’s really hard. This is just her hard thing, and it’s OK. She’s not special because of it, or not deserving praise more than anybody else. It’s just dealing with her hard thing that’s incredibly obvious.”
Another obvious thing about Katie is her love for music.
“I am playing the piano and percussion with my private teacher,” she said in an email. “I also play percussion in the band at school.”
In fact, she has hopes of turning that love for music into a profession.
“I would like to be a pop dancer when I grow up,” she said.
The term cerebral palsy does not refer to one single, specific affliction, but refers to a broad range of childhood neurological disorders permanently affecting a person’s muscle control, balance and coordination.
For Katie, living with CP makes it difficult to get around. Her movements are exaggerated and sometimes involuntary. She can walk, and will eagerly do so when the situation calls for it. But walking is an exhausting exercise for her. While at school or getting around town, Katie spends much of her time in her motorized wheelchair.
Perhaps the most difficult challenge for Katie is communicating with other people. Although she can make sounds, including a bubbly laugh she uses often, Katie is non-verbal and must rely on her “talker” to express her thoughts to other people.
More precisely referred to as a “speech-generating device,” Katie’s talker is a touch-screen digital tablet device loaded with text-to-speech software. Using both symbols and alphabetic text, Katie is able to type in complete sentences that are then broadcast as a computerized voice output. Think of Siri’s voice on an Apple iPhone, except higher pitched and more robotic sounding.
The talker, or “Bob” as her family sometimes refers to it, allows Katie to communicate with the people around her — but it has some deep limitations.
Cerebral palsy is not a progressive condition, meaning that the brain damage that is the source of the affliction doesn’t typically get worse over time. However, as Katie has begun to enter puberty, her ataxia (shakiness) has gotten worse.
Typing on her talker’s screen requires fine motor skills and has become more difficult for Katie over the past year.
“It has become so much more fatiguing for her to communicate that way,” Elizabeth Hill said of the challenges Katie faces in using her talker.
Bob is also somewhat temperamental.
“Sometimes he shuts down all by himself,” said Amber Anthon, Katie’s paraprofessional who assists her at school. “Sometimes he says 20 things that she didn’t punch in. It’s really quite time consuming.”
The length of time required for Katie to type in a sentence and then broadcast it to friend or acquaintance effectively stops her from conversing with people. Despite the technology, making new friends her own age is a difficult task for Katie.
“The wait time is incredibly uncomfortable for many people,” Elizabeth Hill said. “If we go to a park and a kid comes up and asks her a question, by the time we get her talker out and turn it on and she starts formulating an answer, they’ve already lost interest and moved on. I think for her it’s often a question of whether it’s worth the effort. Is this person willing to give me the time? I know she’s got some good pals at school, but would I say she has best friends she tells her heart and soul and secrets to? I don’t know if that’s happened yet.”
Read the rest of Katie's inspiring story here.