Saturday, November 24, 2012

Living with Down Syndrome

By Christina Kristofic from Philly
If you ask Kathryn Drenth to tell you about her Down syndrome, she’ll probably pull down her shirt and show you the scar from the open heart surgery she had when she was 6 months old. Her mother immediately will make her cover up and say, “Remember what we said about privacy.”
Mariah Drenth-Cormick is trying to stop that demonstration now because she knows it won’t be long before that’s a social taboo.“I don’t think she thinks Down syndrome is any different from the scar on her chest,” Mariah told a class at Delaware Valley College recently.
Seven-year old Kathryn thinks she’s just like other kids her age.
And in some ways, she’s right.
Kathryn has the same energy and excitement for life that other kids her age do. She loves going to Simon Butler Elementary School, where she sits in a mainstream class and studies the same things other second-graders do.
Kathryn loves playing with her classmates at recess or after school. She loves spending time at home with her family, where she might watch cartoons, play games, lead a dance party, read to her baby dolls or fight with her younger brother.
But Kathryn and her classmates are only 7. And Kathryn’s classmates don’t have an extra chromosome that will slow their physical and mental development.
So how much longer will Kathryn be like most of the other kids? When will they outpace her?
Mariah Drenth-Cormick, one of the co-chairwomen of the Bucks County Down Syndrome Interest Group, knows her daughter will always be behind other kids.
But she doesn’t know by how much.
Mariah said the geneticist at The Children’s Hospital of Philadelphia who officially identified Kathryn’s condition a few days after she was born told her that Kathryn would not be able to do basic problem-solving tasks. The example the geneticist gave Mariah, which she gave the students at DelVal was: If someone told Kathryn to take the elevator to the third floor of a building and use it again to get back to the first floor, and a fire broke out somewhere in the building, Kathryn would not know to take the stairs and would insist on waiting for the elevator to get out. But Mariah knows that’s not true of her daughter.
“This girl can connive anything out of anyone and she has very good negotiating skills,” Mariah said.
Mariah is letting Kathryn show her — and others — what Down syndrome is.
As one of the co-chairs of the Bucks County Down Syndrome Interest Group, Mariah represents about 160 families of children with Down syndrome in Bucks County. She regularly takes Kathryn to meet women who are pregnant with or just gave birth to babies with Down syndrome, so the women can “see what a kid with Down syndrome looks like, what they can do and can’t do, how they bend in half.”
The visit to DelVal was the first time Mariah took Kathryn to speak to a college class.
“I just want to create the normalcy about it,” she said.
“Yes, it’s an extra chromosome. It’s not that scary. I think when people hear Down syndrome, especially older people, they have a preconceived notion that you put the child in an institution. We have special education, an IU, so many wonderful supports in place... Kathryn is only one grade-level behind. She can do everything on the playground except for the really high monkey bars. I can’t do the really high monkey bars. She’s just had such an awesome team and support that has helped her succeed.”
Kathryn crawled at 10 months and walked at 2 years old — later than most kids.
She started occupational therapy, physical therapy and speech therapy as a toddler, so she is more advanced than some other kids her age who have Down syndrome. Mariah said she knows other children in the area who have Down syndrome who have to go to another school that offers more support for them.
Kathryn’s condition means she has trouble reading and writing some words her mainstream classmates already have mastered. Her speech isn’t as clear as theirs. And because she has low muscle tone and control, her handwriting is bigger and sloppier.
So she gets extra help each day from therapists and learning support teachers.
The other kids in her mainstream class, who might know that Kathryn is different, don’t treat her like she is.
“This group of second-graders is one of the kindest groups I have ever met. There is this genuine respect the kids have for each other,” said Susan Zubak, Kathryn’s second-grade teacher. “And Kathryn is a bit of a celebrity at times in here. Kids will actually go out of their way to have the opportunity to read with Kathryn.”
Being part of a mainstream class is good for Kathryn’s growth and development, Zubak said, because it gives Kathryn the opportunity “to come in and see some higher-level thinking skills going on and model herself off what she sees going on in the classroom.”
The kids in the mainstream class learn from it, too. Rebekah Detweiler, Kathryn’s learning support teacher said, they can get to know Kathryn “and see that everyone’s different and there’s all different kinds of people.”
And then, Detweiler said, Kathryn and other children with development disabilities can “feel like they’re included with their community of learners.”
Kathryn’s family tries to treat her like a typical child her age and sets high standards for her. Mariah said, “She has boundaries. ‘Here’s what we expect of you in public. Don’t lift your skirt. Sit like a lady.’ “
Some of the other rules: Say “please” and “thank you,” don’t give other people attitude.
Kathryn follows the rules most of the time — as well as any 7-year old can. And her parents remind her of the rules regularly.
“We want her to be an independent person who eventually has a job,” Mariah said. “If we coddle her and do things for her, she’s never going to learn to do things for herself.”
Mariah said she and her family want to see Kathryn have her own home one day and “have any opportunity a typical person would.”
“If she wants to go to college, we’ll find a college that will meet her needs,” Mariah said. “I think she can be anything she wants to be.”
If you ask Kathryn what she wants to be when she grows up, she’ll give you a different answer each time. She told a reporter one day that she wanted to be a teacher. She told the DelVal class she wanted to be a princess.
She has typical 7-year old dreams.

No comments:

Post a Comment