Date Published: July 22, 2019
The Lurveys’ passion for autism research can be explained in one story about their daughter Kaylee, 12. It goes like this:
One day Kaylee decided to sit in her grandmother’s chair after Memere, as her grandmother is called, left to fetch a cup of coffee. When Memere returned, she asked Kaylee for her chair back. Kaylee glanced at her grandmother and pointed to another chair. “You go sit over there,” Kaylee replied.
Her family gasped. Kaylee, who has autism, had not spoken a word in years. “Good job talking, Kaylee, but don’t sass Memere,” her grandmother said.
Kaylee’s mother, Candy Lurvey, explains, “Kaylee is considered nonverbal, but every now and then she will have what we call an open window, where she will actually say something. So speech is still in there.”
The family hopes researchers will discover how to unlock speech in people like Kaylee. “I would love to hear that little voice again,” Lurvey says. That is one of the reasons the Lurveys joined SPARK, the nation’s largest study of autism. “The more knowledge, the better,” says Matt Lurvey, Kaylee’s father.
The Road to Two Diagnoses
Kaylee began to speak as a toddler. She could say mom, dad, kitty, hot tea, and Boball, her word for Snowball, their cat. Between ages 2 and 3, she gradually began to lose those words. A doctor in Portland, Maine, diagnosed her with autism at age 3. A family committed to volunteer work, the Lurveys began organizing fundraisers for an autism organization.
Kaylee entered an early intervention program, where she learned to communicate by exchanging small cards with pictures on them. She later learned to use an iPad that has a communication app for people with limited speech. She can touch a series of picture symbols to create sentences, which a computer-generated voice speaks aloud. “Her very first sentence was, ‘I want ice cream,’” says Candy Lurvey, who made sure Kaylee got her wish. “That was the best bowl of ice cream I ever had,” Candy Lurvey recalls.
A doctor who specializes in genetics later diagnosed Kaylee with 10q deletion syndrome, Candy Lurvey says. The rare condition occurs when some of the genetic material on chromosome 10 is missing. It is associated with neurodevelopmental conditions. The Lurveys contacted Unique, a nonprofit in the United Kingdom that serves people with rare genetic conditions. Unique connected them with other families like theirs.
A few years later, Candy Lurvey attended an autism conference in Portland, where she saw a table advertising the SPARK study. She registered online in about 10 minutes and received a kit for collecting saliva samples in the mail. She, Matt, and Kaylee provided samples for SPARK to analyze. It took a little longer to get Kaylee’s sample, in part because Kaylee found the saliva collection process to be quite amusing. “Watching her giggle was good fun,” Candy Lurvey says. She also serves on the SPARK Community Advisory Council.
Lurvey hopes that research will find solutions to the sensory sensitivities common in autism. Kaylee finds it painful to have her brown hair brushed every day, even though Lurvey uses a special brush, detangling spray, and a very gentle touch. “I don’t want her to cry when I brush her hair every day,” she says. “I would love for that pain to go away.”
And she hopes research could help unlock Kaylee’s ability to show what she knows. Just as her speech comes and goes, so does her ability to show what she has learned, sometimes. “She’s smarter than people think, but her ability to output isn’t there all the time,” Lurvey says.
Special Interests in Autism
Like many people with autism, Kaylee has an intense interest. Her “autism obsession” is bouncy balls, ball pit balls, kickball balls — pretty much anything round that bounces, Lurvey says. When her collection reached 1,000 balls, the family had to get rid of some.
Lurvey once heard scientist Temple Grandin, who has autism, discuss using students’ special interests to help them find careers in adulthood. Lurvey agrees with that advice. “Maybe Kaylee can work in a ball factory one day, or be a tester. Or she could get a job pulling out all the broken balls from a ball pit. Who knows what the future holds for her?”
In the meantime, the Lurveys enjoy watching Kaylee learn new things, like dribbling a basketball with two hands. Kaylee also has an impish sense of humor that delights her parents, two older siblings, and grandparents.
That playfulness was on display during one of her “open window” moments several years ago. One day Candy Lurvey’s mother-in-law was trying to wash dishes, but Kaylee kept putting her own hands in the dishwater. “My mother-in-law said to Kaylee, ‘Are you helping or being a hindrance?’” Lurvey recalls. “And without skipping a beat, Kaylee looked at my mother-in-law, kept playing in the water, and said, ‘Hindrance.’”
Lurvey laughs — “I love that kid.”