World Down Syndrome Day: a day for awareness, acceptance


Multiple Authors

My brother truly is like no other

As a little girl, I loved playing with my younger brothers, Matthew and Daniel, and my younger sister, Jessica. Since the four of us are only four years apart, it wasn’t hard to find common interests among us. Sure, the boys were into dinosaurs and Power Rangers, while Jessica and I preferred horses and Disney princesses. Even so, we still somehow managed to weave all of those things into our own games and stories. As siblings went, we were practically inseparable.
Being as close of a family as we were, none of us ever really questioned why Matthew had to wear special inserts in his shoes or go to physical and occupational therapy at Boone Hospital every week. We all learned a few words in sign language such as “please,” “thank you,” “more,” and “chicken” — Matthew’s favorite — and used them out of habit while Matthew was still learning to speak.
It was never kept a secret from any of us that Matthew had Down Syndrome, though I can’t really say when I truly realized what that meant. He was my brother, and that was that.
Later on, of course, I began to notice a few differences in Matthew’s routine in comparison to my siblings and me. He attended Bearfield Elementary and Parkade Elementary’s preschools rather than the Academy of Early Childhood Learning like the rest of my siblings and I did. Every time we went to the pediatrician’s office for our yearly check-up, Matthew had to have blood drawn to test for thyroid issues, common in children with Down Syndrome. Instead of playing catch or drawing, his favorite activity consisted of gathering up a handful of crayons and feeling them roll across his fingers into his lap.
He could also be extremely difficult at times and loved testing the boundaries of everyone’s patience. In elementary school, this usually meant hiding under desks or trying to run away from his teachers in an act of defiance.
“Tina, he called my bluff,” the Mill Creek assistant principal said after one particularly challenging day in Matthew’s second grade class. “I gave him the option to either crawl out from under the desk or I would call you.” He was still under the desk and refusing to move.
Yet, even with Matthew’s quirks and orneriness, he was still just like any other kid. In my fifth grade year, I remember giving him a hug everyday as our classes walked past each other in the hall after lunch. He played with his friends at recess and got in trouble making jokes and laughing with them too much during class. Though his core classes like math and reading were less advanced than those of his classmates, he still brought home a few worksheets every afternoon that he worked on with my mom while Daniel and I did our own homework.
Now, at almost 15 years old, Matthew faces moving on to his freshman year in high school and his first new special education teacher since kindergarten. His teenaged years have brought their own share of trials, including a clichéed attitude toward his parents and a few innocent crushes along the way. More than anything, he is excited to finally come to RBHS and eager for the extra freedom he will have from his time at Gentry Middle School.
Some people may think that, because of his Down Syndrome, Matthew is somehow different from everyone else. While they may be subtle, the sideways glances of strangers around town and the anxious supervision of inexperienced teachers tell me as much. But despite having an extra chromosome, Matthew is sweet, funny, smart, obstinate, hard-working and sarcastic. He worries about what classes he will take in high school next year, goofs off with his friends, prays for snow days and counts down the days until his birthday at least a month in advance.
Down Syndrome is only a part of my brother’s story. Matthew, even with Down Syndrome, is still Matthew. While he will always rely on others for some daily tasks, he still has his own opinions, desires, talents and hobbies. He still loves listening to music, making his friends laugh and watching movies with his family.
Even with Down Syndrome, he is still — and will always be — my brother.[vc_gallery type=”flexslider_fade” interval=”10″ images=”272693,272698,272692,272699,272695,272696,272691,272697,272694,272689″ onclick=”link_no” custom_links_target=”_self” title=”Then and now: our family through the years” img_size=”full”]By Nicole Schroeder
photos by Tina and Alex Schroeder

The girl who does it all

To most other freshmen, Sydney Kent’s crammed schedule of after-school clubs and activities would be a daunting undertaking. Certainly, being involved in Southside Singers, Women’s Chorus and the RBHS junior varsity cheerleading squad, as well as cooking classes and cheer squads outside of school can make her feel overwhelmed at times.
Even with all of her outside activities, however, Kent’s determined attitude toward the things she feels passionate about and the love of music she shares with her parents far outweigh any stress her level of involvement might cause. The fact that Kent has Down Syndrome, a type of disability often characterized by an intellectual delay as well as multiple other physical traits according to the National Health Service, simply makes her hard work all the more inspiring.
Choral director Mike Pierson said it is especially easy to see Kent’s dedication to the choir program through her boundless enthusiasm for music and performance in every rehearsal.
“Sydney’s a hard worker. She loves to sing and loves to perform,” Pierson said. “She’s really engaged in what we’re doing this year in all facets, whether it’s stand and sing or show choir where we’re dancing and singing.”
With both her father and mother being musicians, it is no wonder that Kent enjoys music so much. Her passion for singing and performance especially shows, Sydney Kent’s mother, Lisa Kent said, in the effort that she puts into learning her music.
“She does a really good job. She can match pitch really well,” Lisa Kent said. “She still has some intonation problems, but she memorizes her music beautifully. She knows all the words and dance moves. [Pierson] said she’s doing great.”
Even with the decreased coordination and speech difficulties caused by Down Syndrome that could make Sydney Kent’s participation in choir more challenging, Lisa Kent said she has never been given any special treatment by Pierson or her other teachers.
“Sydney went and auditioned for him, just like everybody else. I kind of stood back. I don’t know. I might’ve even left the room,” Lisa Kent said. “He had her at the piano, and he did really, really well with her [since] kids with Down Syndrome have a hard time matching pitch.”
While Sydney Kent is active in choir and Southside Singers, she also participates in multiple cheerleading squads throughout Columbia. Earlier in the school year, she joined the RBHS junior varsity cheerleading squad and performed with them at football games. Lisa Kent said the cheerleading coaches were very understanding of Sydney Kent’s limitations and allowed her to alter the program if she wasn’t able to do a certain cheer or make certain practices.
“They’ve been very good about allowing Sydney to do what she needs to do,” Lisa Kent said. “At football games, I would go and I would sit close and I would have her jump up for the cheers she knew and then hop down … when she didn’t know it. Now, her arm lines might not have been as crisp or she might’ve been that far behind, but it was so cute when she got it.”
Pierson agreed and said that, while Sydney Kent might have needed extra assistance and guidance during her participation in Southside Singers, she was never given any special treatment compared to the other students because of her disability.
“There were times when she was not comfortable being in her performance shoes for show choir and so we had some people helping her across the stage,” Pierson said. “But other than that, [she was never treated differently].”
Despite her hard work in all of her after school activities, however, Sydney Kent still faces some difficulties in her day-to-day life because of her Down Syndrome. Communication with someone she doesn’t know, she said, can sometimes make it hard to make new friends.
“I get nervous a lot whenever I meet new people and it’s really hard for me to communicate and I just need more [guidance] on that,” Sydney Kent said. “[But] there is one girl who is my friend at school and at lunch I started to talk to her about school and what’s going on with her grades. We’re a perfect match.”
Compared to past school years, Lisa Kent said Sydney Kent has been much more accepted at RBHS and has been able to find friends through her participation in choir and cheerleading.
“I think she got to Rock Bridge and she found her people just like everybody else. You’re a jock and you hang with the athletes and you’re a musician and you hang with the band geeks,” Lisa Kent said. “We don’t want to necessarily label, but there’s something about recognizing people who have the same interests.”
Because of her Down Syndrome, such acceptance for Sydney Kent is rare. While bullying has never truly been a problem, Lisa Kent said many people have simply ignored Sydney Kent, whether it be because of her shy attitude or their lack of understanding of her disability.
“I never saw any [bullying]. Not from the crowd, not from the girls. It could be there and I just don’t see it, but I think the thing that happens to Syd is that people just ignore her. They just don’t know what to do,” Lisa Kent said. “Last year, at Gentry, she was struggling with her behavior, and I think that’s what it was caused by — attention. Now, this year, she’s so much more included and active in, not only cheer, but choir that she’s fitting in really well.”
As for her future past RBHS, Lisa Kent said she sees her daughter living independently and said she and her husband will support Sydney Kent in whatever she chooses to do. For Sydney Kent, that means one day living in her own house and getting a job.
“I want to get a job at Wendy’s,” Sydney Kent said. “I want to serve the fries and be the talker. I always memorize my music and everything, so [I’m good at memorizing orders].”
By Nicole Schroeder
Pom-pom perfection: Freshman Sydney Kent gets ready to perform with the RBHS junior varsity cheerleading squad at a football game September 26, 2014. photo by Lisa Kent

Times change; so, students say, should vocabulary

“He’s really into werewolves so whenever he gets mad he just starts breathing really heavily and making his hands into claw shapes and saying that he’s turned into a werewolf,” freshman Anna Inslee said.
Inslee has a 13-year-old cousin with Down Syndrome, so she knows firsthand how painful and rude it is when somebody uses the ‘r’ word whether they mean it to be hurtful or not.
Thinking back to a few years ago, she said she can remember a time when many people used the word ‘retarded’ to make fun of someone who got an answer wrong on test, accidentally tripped on their own feet, or worst of all, someone who had a mental disability.
“I don’t like it when people use the ‘r’ word because they’re basically making fun of people for something they can’t help and making it a synonym to words like stupid and dumb when that’s not what it is at all,” Inslee said. “It’s just a different brain than the majority of people’s.”
In the last few decades, more and more medical information about mental disabilities has been available. People say they know the word ‘retarded’ does not do individuals justice and that living with a mental disability does not make a person lesser, just different.
“Initially the ‘r’ word was something that everybody said. But as we progressed, there were other words like ‘disability’ and ‘people with disabilities’ and then there were names for those disabilities. It’s always best to point out that disability, than to just put them all under the umbrella for ‘retarded,’” said Michael Woods, who works with students in the special education department at RBHS. “We should be doing a lot better with some of the things that we are saying, because they have feelings.”
Woods said he doesn’t like that the ‘r’ word groups all kids with mental disabilities, when they are each unique.
So why does the ‘r’ word still get dropped in classrooms across the nation, in joking and serious manners?
“I first heard it about age six when I was in elementary school. At first it was a joking term for when someone made a mistake,” junior Elaine Phillips said. “As I got older, I realized what those who said it were actually saying. I really realized when I read an old medical book and found it described as a medical term. Now when I hear it, it makes me unhappy and uncomfortable. I urge those who say it not to.”
[quote cite=”Michael Woods, RBHS faculty member”]“Initially the r word was something that everybody said. But as we progressed there were other words like ‘disability’ and ‘people with disabilities’ and then there were names for those disabilities. It’s always best to point out that disability, than to just put them all under the umbrella for ‘retarded.’” — faculty member Michael Woods [/quote] Phillips believes if more people spoke up against the word, and informed people who use it of its negative connotation and inaccuracies, then the word could ultimately die out.
“More people are respectful of it now, which I am happy about,” Phillips said. However, she believes that “with advocacy” the word can be eradicated. “I know I’ve tried to stop others from using it when I knew what it really meant. I’m sure if more people knew they would stop using the word.”
Many, like Phillips, have realized what the impact of the ‘r’ word is and dropped it from their vernacular. But some still linger behind the times, using the word incorrectly and causing inadvertent, or sometimes purposeful, pain.
Inslee’s family works to ensure her cousin is surrounded with love and that anyone who doesn’t treat him correctly is shut out.
“The people around my cousin are actually really nice to him and even if they weren’t his family is super protective so they’d get to the person who called him that,” Inslee said. “Whenever somebody uses the ‘r’ word around me, I usually just say my cousin has Down Syndrome, and then they get really uncomfortable, so I guess that’s calling them out.”
Inslee, like Phillips, works to call others out when they use the ‘r’ word. She reminds others that just because someone is different they are not less than everyone else.

“Just because somebody is different than most people doesn’t mean they should be made fun of for it. I think people with Down Syndrome should be treated respectfully for the same reason you treat everyone else respectfully, it’s just the obvious thing to do.” — freshman Anna Inslee ”

“Just because somebody is different than most people doesn’t mean they should be made fun of for it,” Inslee said. “I think people with Down Syndrome should be treated respectfully for the same reason you treat everyone else respectfully, it’s just the obvious thing to do.”
Woods also disagrees with the stereotyping that is behind mental disabilities. He believes that the ‘r’ word contributes to these stereotypes by grouping anyone who has different brain chemistry as ‘retarded.’
“Just because they have different ways of expressing themselves from ‘regular’ people [doesn’t mean] that person’s not normal,” Woods said. “I believe in God, and God put us all here for a reason, we can learn from one another.”
Woods said he gets the opportunity to learn from students a lot when he works with them during the summer. He loves seeing their excitement and their motivation. He doesn’t dwell on their disabilities as something that holds them back but rather something that sets them apart.
“I really like working with kids with special needs because every summer I usually work with a group called ESY, extended school year. That’s where all kids in the district come out to Rock Bridge on the right hand side of the building, and we just keep up on their daily skills,” Woods said. “What I found out is that these kids really want to be here. They really want to learn. I get pumped up about it. I get enthused about it. I get psyched about it. I give hugs; I give high fives … I see them all as kids, but some are different.”
By Abby Kempfinfographic by Abby Kempf