Second of a two-part series to increase understanding and respect
by Lora Koch, The Scranton Journal
“Every child is a different kind of flower, and all together, they make the world a beautiful garden.” Author Unknown
As part of our series on Down syndrome awareness, we had the privilege of interviewing four special families with children who have Down Syndrome. The above quote could not be more true in each of these family situations – every child with Down Syndrome is special and makes the world a more beautiful place. And while each child is unique, there is one thing they all have in common – they want to be accepted, respected and treated like everyone else.
Kourtlin Thacker of Scranton, junior at Paton-Churdan High School
“Acceptance is a learned behavior – if adults treat Kourtlin like anyone else, kids do, too.”
Karibeth Baker received the news of Kourtlin’s Down Syndrome diagnosis right after he was born. “He had no major health problems, but very low muscle tone. They said he would be lucky to walk, let alone run.”
Like many Down Syndrome cases, Kourtlin has progressed far beyond medical predictions. “He started playing basketball his sophomore year,” said Karibeth. “He made his first shot the first game of his junior year.” Pictured in the Paton-Churdan gym are (from left) brother Bryce, Karibeth, Kourtlin, Corey and sister Kalyssa.
Like many boys his age, Kourtlin loves all sports. “He has played baseball with the Challenger League at the Boone complex,” said Karibeth. She laughed and added, “He wants to play football, but Mom says no!”
Karibeth and her husband Corey Baker speak very highly of Kourtlin’s experience at Paton-Churdan High School. “The smaller school has made all the difference,” said Karibeth. “They are focused on Kourtlin and what is best for him.”
His special education teacher is Mrs. Paulson and paraeducator is Tracy Burgart, and they have made unique learning opportunities for Kourtlin. “They have created jobs for him for daily living tasks, like recycling, wiping tables, shelving commodity cans matching where they go, sorting coins for the pop and juice machine,” said Karibeth.
During his middle school years the Bakers lived in Boone, and due to the size of the school and the number of students with special needs, the special education classes were more segregated than at Paton-Churdan. “He likes to be included in the regular classes, and there were better opportunities here,” explained Karibeth. “His behavior has skyrocketed in a positive direction.”
Kourtlin’s verbal skills are minimal, but they have learned to adapt. “His mom understands 100 percent of what he says,” said Corey. “To speak with me, he uses lots of hand gestures. He understands most of what we say. He receives information, no problem.”
At school, Kourtlin uses an iPod with a communication app. Proloquo2Go® is a symbol-supported communication app by AssistiveWare that provides a voice to individuals who are unable to speak. For example, select a picture icon and the iPod voices, “My name is Kourtlin. I play basketball.”
Karibeth and Corey glow when they talk about Kourtlin. “His personality is the best. He is hilarious, funny, kind, and helpful,” said Karibeth. “He is a good friend to all of his friends.”
They want to remind others that Kourtlin and others with Down Syndrome are just like everyone else. “You can hurt their feelings or make their day, just like anyone else,” shared Karibeth. “Kourtlin is very receptive to others’ emotions, like when the boys were sad and crying after they lost their basketball game, he was sad and cried, too.”
Because Kourtlin follows the behavior of other students, Karibeth and Corey have this request, “Be the best role model you can be – Kourtlin is watching everything you do!”
Tate Lawton – Jefferson, 1-year-old son of Tanner and Amber Lawton
“Those with Down Syndrome are still people, still have feelings, they are not that different from us.”
When the Lawtons found out that Tate had Down Syndrome, they didn’t know what to expect. Research helped to reassure them and understand that all children are unique. “We knew he would be more the same than different than other children,” said Amber.
Some of the biggest adjustments after Tate was born were his immediate medical needs. “Tate spent nine days in neonatal intensive care, and was at Mercy Hospital in Des Moines from March until September,” said Amber. “He had two heart surgeries, and his heart is repaired at this point.”
Another unexpected event was emergency eye surgery in February of this year. “Before we left the hospital after his heart surgeries, they told us to get his eyes checked,” said Amber. “There was a three-month waiting list for the specialist, and then we found out he had glaucoma. They got us to Iowa City for emergency eye surgery.”
With Amber working as a chiropractor in Jefferson and Tanner employed by West Central in Scranton and farming with his father, they knew specialized day care would be important. “We have a home nurse who comes here each day. This helps keep Tate healthy, away from the bugs at day care.”
Now that most of Tate’s health concerns are resolved, they delight in being parents to Tate. “He is a blessing in disguise, and changes you for the better. I am more tolerant and patient with all people,” said Amber.
Tanner added, “It gives you a new perspective: you appreciate everything you have. We want him treated like a normal person, don’t treat him differently. He can do just what you do, and will just do it differently.”
They are optimistic about Tate’s future. “How many adults with Down Syndrome are doing all the things they are doing,” said Tanner. “Look what Genesis has done for all individuals in Greene County.”
The support of their family and other parents has been invaluable to them. “Once we started talking to other parents, it eased things a lot,” shared Amber. “And we have great family support. They know Tate and his health concerns. They are always good to babysit and help out.”
Amber offers advice for others who may be concerned about Tate. “A common response we get is pity. Down Syndrome is not a horrible thing. He’s our baby just like any other child.” She added, “Instead of staring from a distance, talk to us, ask about our child. We are more than happy to educate others about our child.”
As part of their interest in educating others, the Lawtons are changing their sponsorship of Michael and Trent Murphy’s race cars. Tanner explained, “They will now have stickers that say ‘Race Fans Support Down Syndrome Awareness’ and will have Down Syndrome ribbons on their cars.”
Megan Rolfes of Redfield, 2014 graduate of Panorama High School
“She has always been involved in Special Olympics…and once or twice qualified for State in Ames.”
Marty and Paula Rolfes realized Megan had Down Syndrome shortly after she was born. “Megan was having difficulty nursing, and the nurse at Methodist hospital recognized the symptoms – one palm has one line, second toe was longer, and slanted eyes,” said Paula. “They assigned us a nurse who has a child with Downs, and was active in a group ‘Up with Downs.’ We were on their board a few years, and now there is Gigi’s Place, so we all have a place to meet.”
As is often the case with Down Syndrome, there were a few medical concerns. “Megan had a heart defect, but they did not know it at first. They thought it was a heart murmur,” shared Paula. “At four months, her heart was repaired. She also needed a feeding tube at about one month old.”
At the time Megan was ready for preschool, the Rolfes were living in Adel. “She attended a special education preschool at age 3-1/2, and then attended half-day special education and half-day kindergarten to mingle in the classroom,” said Paula. “At age 7, they had a special program at Minburn so she attended there through fifth grade.”
Megan transferred back to Adel to attend middle school. At this point, Megan had a younger brother Justin and sister Nicole, and the family weighed all their needs. “When Justin was in sixth grade and Nicole in fifth, we moved east of Panora and they all attended the Panorama Community School District,” explained Paula.
It was always a goal for Megan to graduate from high school, and she accomplished that last May. They started preparing her early for life after high school. Pictured on Graduation Day are (from left) Nicole, Marty, Megan, Paula and Justin.
“Before graduating, she did work-study with half-time working at REM in Adel and half-time attending school,” said Paula. “Home Care in Adel transports her each day to REM. Her job is painting decorative stones, sometimes custom pieces, and they stamp greeting cards.”
“She likes her job, but misses the normalcy of the school atmosphere. But this gives her a chance to be out in the community.”
Paula beams when she talks about Megan’s special talents. “Being funny, she makes people smile, she is good about that! She makes people laugh. We treat her like any other kid. She can be ornery and stubborn like any other kid, but overall she has done very well.”
Megan has always enjoyed extracurricular activities. “She has always been involved in Special Olympics through the school, basketball, bowling, and the track meet at Simpson. Once or twice she qualified for State in Ames,” said Paula. “She has also done the Challenger League in Des Moines for indoor basketball, softball and soccer, and was in dance until she was about 10 years old.”
Her family always made sure she was involved in school activities like all the other kids. Megan attends her sister’s and brother’s athletic and arts events, though prefers to wear headphones if things get too loud. She was a shining star of her senior prom, proudly escorted by her father.
For the future, they take things a day at a time. “Megan can’t be left alone. She needs supervision,” shared Paula. “It’s hard to find a place where we know she’ll be comfortable. Dad is holding on as long as we can to keep her at home, and that’s fine with me!”
Maysie Meyers of Coon Rapids, freshman at Coon Rapids-Bayard High School
“Other kids need to think about that they will move on with their driver’s license, go to college, and she can’t. They have all this to look forward to, so please take time for her. How could it be hard?”
The first thing you notice when you meet Maysie Meyers is her genuine, sweet smile. A freshman at Coon Rapids-Bayard High School, she is the youngest of four children. “Maysie is always happy, and it doesn’t take much to make her happy,” said her mother, Brenda Meyers. “If you are having a bad day, she cheers you up.”
Brenda feels fortunate that her mother gave her good advice on having a child with Down Syndrome. “She taught me not to treat her differently,” said Brenda. They have made every effort to treat her like other children.
However, Brenda feels that there have been a number of situations when Maysie has been treated differently from other children, and it’s been difficult. “In second grade, the school did not want to take Maysie on the field trip to Missouri. But we insisted they take her, she was no trouble, and she had a blast!”
Maisie and her family enjoy a wide-range of activities together. “We go to KidsFest in Des Moines, we enjoy holidays at Bass Pro Shops, and she likes to go to the races in Boone,” said Brenda. “We also go to Adventureland and the zoo. While Maysie does not have health issues, she does have problems with her legs so she uses a wheelchair, when needed.”
Like all children, Maysie has favorite things she enjoys doing, like playing guitar and swimming at the aquatic center in Coon Rapids.
“If she could be more involved, she would be happier,” said Brenda. “Other kids need to think about that they will move on with their driver’s license, go to college, and she can’t. They have all this to look forward to, so please take time for her. How could it be hard?”
Brenda has needed to learn things, too, about having a child with Down Syndrome. “It takes a little more time to go places, and I worry about her legs,” said Brenda. “She doesn’t like getting her nails done. She is sensitive to some things.”
But without a doubt, Maysie is very special to her family. “Things could be worse, we are thankful and happy,” said Brenda.
