Naia, Growing Older

Caitlin Johnson
December 16, 2002

Naia and her Family

Four-year-old Naia is dancing to a Big Bird song on her Sesame Street soundtrack. She shimmies and prances, racing from the living room to the kitchen and back again, finally skittering to a stop in front of the fridge.

"Mama, juice please," she says, rubbing wide circles across her belly. Her brown hair is pulled back in a barrette, and she smiles shyly at me, a stranger in the kitchen. "Juice," she says to me, as if to explain her presence by the fridge.

"Mmm, Juice tastes good," I say, rubbing my own belly. Naia frowns for a second, confused, then shakes her head gently. "Please," she grins at me, rubbing more slowly.

Rubbing her belly is more than just a childish gesture, it turns out. "It's sign language for please'," her mother, Tierney, explains. She and her husband Greg have been teaching Naia to sign, in order to foster her speech development. It's a stategy they've learned from other parents whose children, like Naia, have Down syndrome.

An Atypical Pregnancy

One in every 800 children has Down syndrome. It is a chromosomal disorder accompanied by mental retardation and, often, heart defects and thyroid and digestive disorders. Most people with Down syndrome have IQs ranging from 40 to 75 on a scale that considers 100 the average.

When the Fairchild's received a positive result for Down syndrome during Tierney's first pregnancy, they were faced with a decision: whether to continue the pregnancy or terminate it. The Fairchilds decided, after intensive soul-searching, to go ahead with the pregnancy. Before Naia was born, their genetic counselor put them in touch with Boston Globe reporter Mitchell Zuckoff. He wrote a series of articles following the couple through their decision-making process, Naia's birth and infancy. Those articles became a book, Choosing Naia, published by Beacon Press in October 2002.

But what about the family that came into being when Naia was born? I spoke with the Fairchilds on December 4, 2002, in their Charlottesville, Virginia home.

Nurturing Naia's Development

Naia, with her brown hair in pigtails and an almost constant smile, is a typical four-year-old in many ways. She's a kind big sister to her two-year-old brother Cole, and the kids in her preschool class like her. In fact, the Fairchilds say, so far parenting a child with Down syndrome has not proved all that different from parenting any child. "As far as [the syndrome's] effect and how we as parents manage it, it's continuous and ongoing, but it's not pervasive," Greg says.

Down syndrome varies in its severity. Not every four-year-old with the condition can count, or handle basic skills like eating, drawing, speaking clearly, using the toilet. Some need intensive supervision and care. The condition is often accompanied by heart defects, hypothyroidism, and a higher than average rate of leukemia, which can lead to early death.

Still, many children with Down syndrome grow into happy, successful adults—many finish high school; a few even attend college. They often work and live independently in group homes or supported communities.

According to early tests, Naia functions at a high level for a child her age with Down syndrome. But she lags behind her peers in language acquisition and fine motor skills. The Fairchilds use specific activities to help her develop. They also use sign language to foster Naia's language skills.

Like most kids with Down syndrome, Naia had trouble with a protruding tongue and lax facial muscles. "When she started to eat solid foods, we started a program using blowing, facial massages, and a brush to stimulate sensations in her face and mouth and help her figure out what to do with the food," says Tierney. They also used a spoon to help her learn to hold her tongue in, as she now does. Speech and occupational therapists helped them design the program.

They stopped using bottles and "sippy cups" when they learned that sucking can slow development of mouth and tongue muscles. That meant cleaning up a lot of spills, but that's just part of the job, they say.

Every few moments, Greg is interrupted by Cole or Naia asking for grapes, or showing off a toy or drawing. He and Tierney interact with both children in much the same way—although Naia sometimes requires more patience and an extra explanation. She is gentle and responsive to her parents and her younger brother.

"All parenting is essentially a lot of project management—from getting them to and from sports or focusing on areas where they need improvement—we probably have to start earlier than most with our interventions with Naia, but it's not really different," Tierney says.

Getting Ready for School

From the beginning, Greg and Tierney have had to become staunch advocates to get Naia the services they felt she needed to prepare for school and learning.

The Individuals with Disabilities Education Act (known as IDEA 97) guarantees certain rights for children with special needs—specifically, education in the "least restrictive environment." It requires states to provide appropriate services, and teachers to work with parents to set goals for kids' education. These are called Individual Family Service Plans for children under age three, and Individual Education Plans, or IEPs, for kids age four and over, who are enrolled in or will soon enter school.

But services can vary, depending on where you live. "The first thing you find out is that while there is a policy about services, there is no specific national policy in the way services are delivered," says Greg. States set their own education standards, and even within a state, different districts may interpret the requirements differently.

They learned this firsthand when they moved from Hartford, Conn. to Charlottesville, where Greg teaches at the University of Virginia's Darden Graduate School of Business. Among the surprises: Virginia requires a co-pay for each service, set on a sliding scale according to income—not a problem for the Fairchilds, but a potential barrier to some parents.

Learning to Speak Up

Naia was two when they arrived in Charlottesville, ready for preschool. With Greg teaching, they thought the university-run child care center was their best option, but there was a long waiting list. Determined, Tierney talked with the center's director, Karen Taylor, who happened to be working on a master's degree in special education. Taylor agreed to enroll Naia, and together they came up with a plan to give students from the University's Curry School of Education practicum credit for serving as assistants.

At age four, Naia became eligible to attend Charlottesville's special education preschool. The city recommended moving her, but Greg and Tierney urged the city's specialists to reconsider. Because Naia was doing well, she was allowed to stay at the university child care center and given an "inclusion teacher," who helps her learn in a regular classroom.

Her parents are optimistic that with the right supports, Naia can stay in general classrooms right through high school. "Her peers can see she's just one of the kids, even if she's not capable of doing everything that they are," says Greg.

Greg and Tierney are quick to acknowledge that their educational levels (both have doctorates) and income have helped them advocate for Naia. "We're relatively more educated about our rights and the range of possibilities that one can get in terms of services," says Greg. "And I think because there's so much flexibility in the system, a lot of kids who don't have advocates aren't going to get the best services they could."

Being a successful advocate, says Tierney, is "partly what you learn from your background and research, and partly what you learn from other parents, from having a network of people who have experienced this." She and Greg have joined with local families to share knowledge and support.

Faith in a Strong Future

Getting Naia's diagnosis early, painful as it was, meant Greg and Tierney went through a grieving process—with its questions, fears and feelings of guilt—before her birth.

"You have to go through that mourning process," Greg says. "Some parents move on through that process, but others get staged, they don't get out of it. They feel embarrassed about it, or are reluctant to get involved and learn about it."

The bottom line, he says, is parents have to believe a child with Down syndrome can make progress, be happy and achieve goals. "What we're really talking about is that you're going to fight for something to the degree that you feel there can be a better outcome [for the child]. If you don't see a better outcome is possible, there are limited reasons to advocate."

"Proud of Me"

So far, they haven't talked with either child about Naia's disability. It's too early, they say, and neither Naia nor Cole seems to have any sense that she is different. They plan to talk to her when it becomes an issue, not before.

Greg is particularly sensitive about this. "I was the only black child in kindergarten. ...It was obvious to me and I'm sure to my peers, but it wasn't an important difference until later on. These things don't become socially important until later."

Because of the publicity from Choosing Naia, the Fairchilds find themselves talking about Naia's condition with neighbors and colleagues more than they might otherwise.

"One of the things we want to do is to keep people's expectations high for Naia," says Tierney. "The good thing for Naia is that she has a diagnosis. The bad thing for Naia is that with that diagnosis come certain assumptions, not all of them positive."

It's nearing bedtime on this cold December night in Charlottesville. Before the nightly bath, there's time for one more round of a favorite book, The Potty Book. Naia likes the book because, like her, the main character is potty training. Tierney pauses dramatically at the end of the story, leaving room for Naia to practically sing the final lines: " proud of me!" Cole smiles as his sister points to her chest and giggles.


Caitlin Johnson is a writer for Connect for Kids.