Shining a light on challenges of Down syndrome
BY SUSAN LaHOUD SUN CHRONICLE STAFF
Sunday, September 21, 2008 2:36 AM EDT
Suzanne and Brian Diercksen with their children, Addison, 7 months, left, and Evan, 2. (Staff photos by Martin Gavin)
Parents of children with condition hope Palinwill bring attention to issue
When Republican vice-presidential nominee Sarah Palin delivered her speech at the party's national convention, Norton residents Brian and Suzanne Diercksen were watching, observing the camera close-ups of one of the candidate's young daughters cradling her 5-month-old brother who has Down syndrome.
And they were wondering.
"We were wondering if she's looking at early intervention, whether he has a heart defect," Brian Diercksen said.
The couple could relate. Their son, 29-month-old Evan, was diagnosed with Down syndrome within an hour of his birth.
The Diercksens and other local parents with children who have Down syndrome said the fact that a high-profile national candidate has a son with the disorder may help to throw a public spotlight on issues they deal with every day.
Willow Palin, daughter of Republican vice-presidential candidate, Alaskan Gov. Sarah Palin, holds her baby brother Trig, who has Down syndrome. At right is her sister, Piper.
"I think it's great we're going to have someone potentially in the highest office in the country who would be an advocate for my family and the thousands of others" who have children, young adults and adults with Down syndrome, Dierckson said.
Down syndrome is one of the most common genetic birth defects in the country, affecting about 350,000 people in the United States, or one in 800 babies, according to the National Down Syndrome Society.
Down syndrome is also known as Trisomy 21 because the disorder is caused by extra genetic material from chromosome 21. It usually results in a combination of birth defects, including some degree of mental retardation, characteristic facial features and, often, heart defects and other health problems.
The severity of the problems varies greatly among those with the disorder, according to the March of Dimes.
Dierckson takes a positive tack, saying those born with the defect are not necessarily disabled; they are "differently abled."
And party affiliation aside, Palin's candidacy is another hopeful sign.
"I think it's helpful for people in our boat who have not had the best of times so far, to have some encouragement," Diercksen said. "She has pledged she will do anything and everything for families with special needs. We love having more advocates, especially in higher office."
Others agree.
"Certainly with Palin talking about it, it shows you don't have to hide it," that having a child or family member with Down syndrome or any other developmental disability is not an embarrassment, said Michael Andrade, executive director of The Arc, a non-profit association catering to those with developmental disabilities and their families.
"It also gets people talking about it - and talking about resources," he said.
Evan 2 and Dad Brian Diercksen, pose at home.
Andrade said the agency is non-partisan, but added of Palin, "She said if appointed, she would be a resource to families."
Of course, as governor of Alaska, she has access to a greater number of resources compared with typical low- and middle-income families, he said.
Still, he said, "She's at the start of her journey," and will likely soon be searching for and finding out about resources and support for her son and family.
"Will she be an advocate and a support? Only time will tell," Andrade said. "As a mother, we would hope she would be sympathetic."
In the meantime, he said, her candidacy may lead to highlighting services that are available for anyone with a developmental disability.
Tracey Sylvia of Attleboro, whose 3 1/2 year-old daughter Emily has Down syndrome, said she hopes that Palin's candor about her son, Trig, her fifth child, will mean people will become more informed about Down syndrome.
"A lot of people don't understand Down syndrome," she said, noting that she's been asked if it is curable or treatable with medication.
"Way back when, they were institutionalized," she said.
Emily, who attends the Early Learning Center at Thacher Elementary School, and others diagnosed with Down syndrome, "are more like other children than not," Sylvia said. "They have fun personalities and family traits."
As far as looks, "she's the spitting image of me," Sylvia said. "They also have talents and gifts, and have to be encouraged just like any other child."
Emily was born with two holes in her heart, a typical condition associated with the disorder, said Sylvia, who also has an 11-year-old daughter Sarah and 5-year-old son Ethan.
The holes healed, not requiring surgery. There is an increased chance of developing leukemia, and like others with Down syndrome, speech is an issue.
Many children with Down syndrome learn sign language to communicate; Emily can sign 41 words.
Diercksen said his young son also signs - he knows about 80 words - and he definitely can vocalize, "No."
Evan has a hole in his heart, but it has been shrinking, bumping off surgery for now.
The family is currently working with a physical therapist to encourage Evan to walk and he's involved in play groups. He'll be going through speech therapy, as well.
"There are a lot of challenges, but he's a very smart boy," Diercksen said.
Diercksen said that while the diagnosis was initially a shock to him and his wife, it put the brakes on their lives and shifted its perspective.
Diercksen said the couple was focused on their careers and material things before they had Evan. His arrival changed everything, including a shifting of their priorities and outlook on life, which Diercksen said has changed for the positive.
He said receiving financing through The Arc to help find caregivers while he and his wife worked and seeing the possible programs in the offing for Evan and others as they mature is something that keeps them looking forward.
"It's been good for the two of us, as well as our growing family," he said, a reference to 9-month-old Addison.
The couple is teaching Addison to sign as she grows up with Evan.
Evan, he said, "is a little boy who has brought a ray of light into our lives," and is the only grandson on both sides of the family.
Sue Gartzke of North Attleboro said that in addition to Palin's putting Down syndrome in front of people, John McCain's wife is a special education teacher, and that may shed even more light on developmental disabilities.
"I think it will bring awareness," said the mother of two, a son Nate, 5, and 3 1/2 year-old Ellie, who has Down syndrome.
Ellie was born with severe medical conditions, including a heart condition which required surgery at 3 months of age. She also was born with a transient form of leukemia that will need to be monitored throughout her life.
While she is not as articulate in speech as the average 3-year-old, "she's very verbal and she understands so much," Gartzke said of her daughter who attends the Early Learning Center in North Attleboro.
"Despite all that, she's a happy little girl," Gartzke said.
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