Wednesday, October 2, 2013

Living with Down syndrome: Families learn, bond after diagnosis

by Briana Wipf from The Great Falls Tribune:
Dinner at the Great Falls home of Jeff, Joan and Jared Redeen is always different, but Jared likes to know ahead of time what will be served.
On Friday evening, it was hamburgers, with a gluten-free bun for Jared. But Jared’s mother, Joan, said every breakfast and lunch are the same for her 22-year-old son.
Jared, who prefers a strict routine, has Down syndrome, the most common chromosomal defect resulting in mild to moderate intellectual disability. Down syndrome occurs in about one in every 691 births in the United States each year, according to the U.S. Centers for Disease Control and Prevention.
But for the Redeens, the abstract statistic is a reality for their family.
Jared is a kind man, dedicated to his family and work, who loves hip hop, pop and classic rock music.
Down syndrome, named after British physician John Langdon Down, who practiced in the mid-19th century and is credited for identifying and classifying common traits of the syndrome, is caused by a complete or partial duplication of chromosome 21. As a result, the individual has 47, instead of the usual 46, chromosomes in each cell in the body.
That extra partial or complete chromosome causes physical symptoms like decreased or poor muscle tone and upward slanting eyes, and intellectual and developmental symptoms such as slow learning, delayed language and speech development and a short attention span. Some people with Down syndrome also have heart problems, hearing and vision loss, Celiac disease and hormonal problems.
Still, while people with Down syndrome have been integrated into schools and communities, and while Jeff Redeen says awareness has grown even since Jared was born, there is still work to be done about educating the public.
Cindy and Richard Luoma’s third child, Kelli, was diagnosed with Down syndrome within six hours of birth.
“We were totally unprepared,” Cindy said in her Fairfield home.
Cindy Luoma recalls feeling shock, sadness and disbelief when doctors gave her the news about Kelli, now 24.
Within two hours of his birth, the doctor told Joan Redeen he suspected Jared had Down syndrome. Joan’s first reaction was to ask the doctor if there was a chance he might be mistaken. He had never been wrong before, he said.
Jared was born with medical complications, including problems with his lungs that impeded his breathing.
“I thought, ‘I can handle Down syndrome. Just let him live,’” she said.
Jared did live, of course, and the Redeens raised him the same way they raised their older son, Justin, 23. Cindy Luoma said she did the same with Kelli and her three other children. Both Jared and Kelli went to school in general education classrooms.
Cindy, a guidance counselor at Fairfield Public Schools, said she didn’t worry about her daughter in school. She said she educated herself about Down syndrome and Montana law before Kelli started school.
“I knew what I wanted, and I knew my rights,” Cindy said. “And (Kelli) got what was in her best interest.”
Today, both Jared and Kelli live at home with their parents, although the Luomas and Redeens know that will most likely not be the situation forever.
After Jared graduated from C.M. Russell High School, he spent another three years at Paris Gibson Education Center taking life-skills classes until he was 21.
Services available to children begin to dry up as people with disabilities age. Securing state funding so Jared can receive services requires he be on a waiting list for several years. Even as they know their children will probably be able to live independently or with a roommate someday, the Luomas and Redeens are happy with their situations.
“Right now this community is a good place for her,” Cindy said of Kelli.
Jared now works at Moonshine Grill doing prep work before the restaurant opens. It is a job he enjoys. Kelli is a cook’s aide at Fairfield Public Schools. She likes the people she works with and enjoys being with kids. But she hopes to work in a bank someday.
The Luoma and Redeen families have two decades of firsthand experience under their belts. But they admit that when they first learned they had a child with Down syndrome, they were unprepared and knew little about the condition.
Cindy Luoma remembers exactly what she was thinking after Kelli was diagnosed.
“All I could think is, ‘She’ll never be a cheerleader, she’ll never play basketball,’ and she just proved me wrong. I was thinking about what she couldn’t do versus what she could do.”
In high school, Kelli was crowned homecoming queen, an experience she said was “awesome.” She plays basketball with the Teton Tigers, a Special Olympics team.
Jared keeps himself busy with work and family activities. He was one of the dancers in the Special Olympic Stars dance group that entertained the audience during last week’s fourth annual Dancing with the Stars of Great Falls.
“It was fun,” Jared said.
Joan is in the final stages of organizing the fourth annual Under the Big Sky Buddy Walk, held at the University of Great Falls campus. The event, which routinely attracts hundreds of people from the area, is a way to bring awareness to Down syndrome, Joan said.
The Buddy Walk is a very visual reminder of the number of people affected by Down syndrome. The rest of the year, that community is less visible, but it is always there.
Joan and Jared make and deliver baskets to Benefis Health System. They are given to new parents of babies with Down syndrome.
There is no reason for parents to feel isolated, said Joan. Down syndrome is too common, the people affected by it too vocal, for that.
The Redeens were already parents once over when Jared was born. They admit they knew little about Down syndrome. Jared began teaching them immediately, both about the condition and about themselves.
Jeff said Jared has taught him patience and that time may not always be as important as he thinks it is.
“It was hard when we first heard (Jared’s diagnosis,)” admitted Jeff. “But we accepted it, and we wouldn’t take it back.”
Both the Redeens and Luomas believe their other children are more accepting and compassionate because they have a sibling with special needs.
But the rest of the world sometimes needs a little education, they say.
“These are people just like everyone else. I don’t think people intend to be mean,” Cindy said. “You just need to look past the surface before you get to know someone.”
Or, as Joan puts it, “Jared is more like me than he is different.”
Reach Tribune Staff Writer Briana Wipf at 406-791-1462 Follow her on Twitter @GFTrib_BWipf.

No comments:

Post a Comment