Washington, D.C., trip proves eye-opener for student with Tourette's syndrome
Chris Kuiper joins 41 other students in the nations Capital where they meet with members of Congress and their representatives to talk about advocating for Tourettes syndrome
As a Tourette Syndrome Association youth ambassador, Chris Kuiper told members of Congress last spring about the difficult challenges facing him as a young person with Tourette's syndrome. He talked about the tics - those involuntary body movements and vocal sounds that characterize the condition - and how they have affected him, as well as how his life has changed for the better.
"I tried to be normal and fit in with my classmates, but my tics made kids cautious of me, like they were afraid that they were going to catch whatever I had," he told Congressional members during a luncheon. "In addition to the constant bullying, tics, and anxiety that I had to deal with, I was trying different medications."
But things later turned around for Chris, who will be a junior next year at Sherwood High School. A karate class helped him learn to handle himself, the bullying stopped, and he even joined a leadership class.
Today, he has a tight circle of friends.
"I learned the value of perseverance and how to succeed through failure," he said. "I am a straight-A student, I am in classes that are meant for the grade level above me (junior), and I can finally go to school thinking that today, I will have a great day... something that I thought would never be possible."
In January, Chris applied to be part of the Tourette Syndrome Association Youth Ambassador Program, and was selected as one of 42 students to travel to Washington, D.C., in April to meet with legislators and learn how to advocate on behalf of himself and other young people with Tourette's. He was accompanied by his mother, Jennifer Kuiper.
He also spent time training with those students as part of a peer-to-peer advocacy program.
During the training session, Jennifer noticed Chris was doodling (drawing a NASA rocket and two prototypes of jets), something she found disconcerting until she looked around the room and discovered that other Tourette's syndrome ambassadors were doing the same thing.
"Of course they were listening," said Jennifer. "They just had to be doing something."
Chris also attended a Congressional briefing and had the chance to meet with health policy advisors for U.S. Sens. Ron Wyden and Jeff Merkley. He also got a chance to meet directly with Rep. Suzanne Bonamici and attended the Congressional luncheon where he was one of four speakers.
"Christopher was very well received," said Jennifer.
He said he was happy he got to meet directly with Rep. Bonamici just outside the House chambers.
Just before they met, Chris recalled a humorous incident where he saw a short woman running down the corridor in a hurry.
"(Rep.) Nancy Pelosi came speed-walking past, and the crowd just kind of parted," he said.
Jennifer said Bonamici was attentive and asked good questions. "She's one sharp lady," she said.
As soon as it was discovered Chris had Tourette's, Jennifer became his strongest advocate and has learn a lot about the condition.
She said while about one in 100 young people have some form of Tourette's syndrome, only one in 10,000 is actually diagnosed.
"It's not like diabetes," Jennifer pointed out. "If you're â€˜ticking,' everyone knows about it."
In addition to his mother, teachers have been incredibly supportive as well including Middleton Elementary School teachers Susan Knight and Diana Paladichuk.
"Christopher's school teachers have been absolutely fabulous," Jennifer noted.
That includes John Niebergall at Sherwood High School, who went so far as to drop off an engineering project Chris wanted to work on during Christmas break. She said others have been supportive as well.
"We couldn't have done it without the number of people that were there for us and now we want to help other families," she said.
Meanwhile, Chris said he'll long cherish his trip to the nation's Capital.
"It was a great time," he said. "I learned to talk with other peers and advocate for myself."
Once he graduates from Sherwood High School, Chris hopes to get a master's degree in aeronautical engineering and become a commercial pilot.
For her part, Jennifer said she's pleased with the way the Washington, D.C., trip went, pointing out that Chris hopes to talk to students about the issues involved with Tourette's so they can better understand those who have it.
"We are in the process for coordinating that for next year," she said. "He's ready."