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Mother embraces challenges and joys of daughter with disability

Kate Basi feels the day-to-day struggles of raising a child with Down syndrome. But she says she would not change her daughter’s condition.
Sunday, June 1, 2008 | 2:00 p.m. CDT; updated 1:56 p.m. CDT, Tuesday, July 22, 2008
Alex Basi, 3, and his sister Julianna, 15 months, play together on the couch. “She’s got every bit as much personality as Alex did at her age. She’s feisty, opinionated, vocal,” her mother said.

COLUMBIA — Nestled in the corner of the couch, 15-month-old Julianna pulled a blanket over her head. “Peekaboo! There you are!” her mother, Kate Basi, cooed while pulling back the blanket, causing Julianna to smile.

After the laughter, Julianna’s brother, 3-year-old Alex, gave his sister a big hug and a kiss on the cheek.

About Down syndrome

CAUSE — Typically, Down syndrome comes from “nondisjunction,” an error in cell division. Though the cause of nondisjunction remains unknown, doctors do know that it occurs at conception and not during pregnancy. People without Down syndrome have 23 pairs of chromosomes, or 46 chromosomes total. The cell division error in this syndrome usually causes Down syndrome patients to have three chromosomes on their 21st “pair,” resulting in a total of 47 chromosomes. DIAGNOSIS — Babies with Down syndrome are usually diagnosed based on appearance, followed by a chromosome study. Common traits of Down syndrome babies include low muscle tone, facial profiles that are slightly flattened, upward slanted eyes and a single crease across the palms of their hands. EFFECTS — People with Down syndrome experience delays in physical and intellectual development. Impairments vary, and many Down patients graduate high school and effectively hold jobs in the community. Some patients require more structure, care and supervision. COMPLICATIONS — About 40 percent of people with Down syndrome also have heart defects. Vision, hearing and respiratory problems are common, as are thyroid disorders, The average life expectancy is 55. VARIATION — There are three kinds of Down syndrome. Ninety five percent of Down syndrome cases are called “Trisomy 21,” which means there are three chromosomes in the 21st set. “Translocation” accounts for another 3 to 4 percent of cases and occurs when part of a 21st chromosome breaks off during cell division and attaches to another chromosome. The rarest form of Down syndrome is “Mosaicism,” which occurs in about 1 to 2 percent of cases and happens when cell division error occurs in the early stages after fertilization. It results in a mix of cells, some of which have 46 chromosomes and some with 47. WHY “DOWN”? — Down syndrome is named for the doctor, John Langdon Down, who in the 1860s and 1870s performed the first major research on the disorder. The name was adopted by the World Health Organization in 1965.

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“It’s like a mutual adoration society around here,” Basi said, laughing.

The littlest member of the adoration society, Julianna, is slightly different from her mom and big brother. They have the standard 46 chromosomes, but Julianna has 47. It’s this difference that means Julianna, along with about 350,000 other Americans, has Down syndrome.

Taking care of two young children can be demanding — the smiles and celebrations often contrast with headaches and frustrations. When one of those children has Down syndrome, which causes developmental delays, the day-to-day challenges of raising a family can be tougher.

Julianna’s diagnosis has left Basi and her husband, Christian, working continuously to make sure they are doing their best for Julianna’s development.

“We have to pay more attention to her,” Basi said as she shows Julianna brightly colored beads and starts another “Spiderman” video for Alex. “Alex used to sit on the floor and I didn’t do anything — he just learned. With Julianna, you have to guide her.”

Basi’s day usually begin at 5:30 a.m., when she wakes to nurse Julianna, exercise and get Alex ready. Julianna has therapy in the morning, and, after that, it’s lunch and nap time until 3:30. Basi teaches flute lessons until five. As the day winds down — no matter how busy it was — the family always has dinner together. When Basi has free time, she works on her musical compositions, short stories or scrapbooking. She also leads a choir at Our Lady of Lourdes Catholic Church.

It’s a full schedule for the family, but the Basis and Julianna have help from Missouri’s First Steps, a program that incorporates the children’s natural environments into therapy to better support the family. Physical, occupational and speech therapists all work with Julianna. Occupational therapist Kim Westhoff sees Julianna twice a week, once at home and once at their church.

“(Kate’s) really able to get down on her level and interact with her,” Westhoff said. “She’s able to juggle a lot of things, which is no easy task.”

But Basi admits that, and at Julianna’s birth, long before today’s couch peekaboo sessions and family dinners, she and her husband went through a stage of rejection.

“I think everybody who has a child with a disability goes though an initial rejection,” Basi said. “We try to be fairly honest about it, because I think it’s important for it not to be sugarcoated.”

Basi said the idea of having a baby with Down syndrome was not easy to accept.

“We were both in shock,” Basi recalled. “We sat there holding each other’s hands and shaking, trying to come to terms with what we were going to do.”

The stage quickly passed, but sadness still returns at times. “You stop crying every day, and you fall in love with the baby, but you have sad periods,” she said.

Through these times, she and her husband turn to their safety nets.

“Our support comes from our parish community,” she said, “and we have really, really good therapists.”

Development is a crucial part of Julianna’s life with Down syndrome, because the disorder impairs learning. Basi said it takes Julianna much longer than other children to have developmental spurts.

“When she’s just hanging out and not showing signs of development, those are times you tend to have the grief return to some extent,” Basi said. “But she’s in one of those explosions now. She wants to get into everything.”

Basi’s experiences as a parent often show up on a blog she writes, http://www.kokopeli74.blogspot.com/. She began the blog because she is trying to launch a writing career, but she often finds herself writing about parenting.

“There are times people need to know what it’s like to have a child with Down syndrome,” Basi said. “When we have a triumph, that’s on there, and when I have blues, that’s on there, too.”

The Basi family is taking life one step at a time. They simply want Julianna to have the same kind of life their son experiences.

“When I say I want the best for my child, I say I want her to walk and play. I want her to have the same kind of fun Alex has in playing,” Basi said.

She feels the push-pull of having a child with a disability: It’s not what she dreamed for her family, but if she could take away Julianna’s Down syndrome, she wouldn’t — because then Julianna would be a different person. Basi said Julianna is perfect the way she is.

“She’s beautiful. She’s got every bit as much personality as Alex did at her age. She’s feisty, opinionated, vocal,” Basi said. “She’s very driven.”

Basi said there’s nothing that sets Julianna apart from other children — she’s easy to love. The only thing that makes her different is the extra chromosome. In August 2007, the Basi family attended a National Down Syndrome Congress National Convention in Kansas City, which Basi said she found aptly themed: “We’re more alike than different.”

According to the National Association for Down Syndrome, some children and adults with Down syndrome require more structure and assistance than others. But many adults with the syndrome are fully capable of working in the community; some even pursue higher education after high school. Even with all the progress Julianna is making, the Basis still have worries, one of them being that she won’t be able to move out on her own later in life. Their biggest fear, however, is that people will prey on her.

“We want her to have an adult life and for her to be able to live in her own space, so we worry sometimes,” Basi said. “But my only fear is of her being taken advantage of sexually.”

Fears aside, Julianna’s small developmental victories have reshaped the Basi family’s perspective of the world.

“It’s given us a whole new depth of appreciation for life,” Basi said. “She’s taught us so much about what’s important and the trappings of life that aren’t really important.”

While sitting at the kitchen table helping Julianna feed herself lunch, Basi pauses and exchanges a lingering glance with her daughter. There are times, Basi said, when Julianna looks at her like she is the center of the universe.

“Look at this,” she said as mother and daughter stare into each others’ faces with big grins. “She’s so sweet, and she’s so cute.”


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