In 2020, Katie was recognized as one of ARC's 'Faces of Change' in bullying prevention for her 20 random acts of kindness project on her 20th birthday!
Tell me a little bit about yourself? (how old are you? where do you live? who do you live with?)
Hi! My name is Katie Kupris. I just turned 22 in November 2021. I live with my parents in Saint Paul, Minnesota.
When did you learn that you were born with a condition called mDs?
I learned about my condition when I was a senior in high school and before my 18th birthday when my parents became my legal guardians. They wanted to make sure that they could continue to help me with my doctor visits and have access my medical records. They wanted to continue to work with my teachers and access my school grades. They wanted to help me with any financial decisions and protect me from scammers that might take advantage of me online or in-person where I could be held responsible as an adult.
How did this change your view of yourself, your parents, your friends?
At first, I was confused. And upset. Why had they kept this news from me? What else were they keeping from me? My mom explained that my teachers knew of my condition, all our family and friends knew, but they decided to wait to explain it to me until I was old enough to really understand and because they didn’t want me to see myself as different or disabled. My parents never labeled me. It really bugs my mom when she explains my condition and people refer to me as ‘high-functioning’, like I’m not a human person. I knew that I felt different sometimes, but I couldn’t really explain why. I understand now why my parents waited to tell me. I’m not mad at them. They help me in so many ways. They are my biggest advocates!
What was grade school, middle school, and high school like for you? (did you have an IEP? Did you receive extra help in school? What services did you receive? How did teachers and students treat you?)
I had an IEP throughout grade school, middle school, and high school, but so did lots of other kids so I didn’t think it was unusual, but I did wonder why I had one.
I struggled with understanding what I was reading and sometimes I didn’t feel very smart, although I really loved math. I didn’t test very well on standardized tests and often would shut down completely when I got stuck. I had pull-outs for special services, speech therapy, reading, and social skills. My mom and dad made sure to send me to local schools in our district to make sure that any special services I would need could never be denied legally, not that this was ever an issue for me, but I hear that it can be for other kids sometimes. I still enjoy bumping into my grade schoolteachers when shopping or at church or walking through our neighborhood.
Middle school was tough on me. I call it the lost years. I was bullied on the school bus during the 7th grade. A girl named Grace kept asking me if I had a boyfriend. When I said I didn’t, she asked me if I was a lesbian. I didn’t know what that meant so I asked my mom to explain it to me. She said that when people call you gay or lesbian, they are usually trying to make you feel uncomfortable which is bullying. Grace bullied other kids on the bus too, so it wasn’t just me. My mom and I talked a lot about bullying during middle school and how to stand up for myself.
But then in the 8th grade I was bullied by a boy in my study class. At first, I wasn’t sure what was happening, but when I told my mom about what was going on, it was starting to get bad. I was afraid to tell my mom because I didn’t want her to be disappointed in me, but I finally did tell her because I couldn’t handle the situation anymore on my own. The boy would comment negatively on my body shape and the clothes I wore to school. My mom called my teacher to ask what was going on and what she was doing to stop it from happening. Many schools have a no tolerance policy to bullying now. My mom has no tolerance for bullies. I tried asking the boy to stop it, but it kept happening, so I told my teacher and then I told my mom it wasn’t stopping. One day as I was leaving the classroom, the boy kicked me and knocked me down. I hit the wall and was stunned. No one helped me. I didn’t know what to do so ran to my afterschool classroom but I couldn’t concentrate so I went to my bus and headed home. It took me a while, but I finally told my mom what happened. As you can imagine, she was very upset. There were conferences at school that evening. We went and met with my teacher first thing. When I explained what this boy did too me, my teacher got very upset. We met with the principle who said he would investigate. My mom asked that the boy be removed from the classroom, which the school did for two weeks. My mom said that wasn’t good enough and that he should be placed in a different classroom so as not to upset my routine schedule. I struggled with transitions when I was younger. The school said that this student had rights too. They asked my parents to meet with the boy’s parents, but my mom wasn’t interested even though she did feel sorry for the parents. She said it must be really hard to have a 13-year-old boy that kicks and knocks down girls that are half his size. Instead, my mom spoke to the special needs program coordinator, and they helped rearrange my class schedule so I wouldn’t have to be in the same classroom as this student. He still managed to scare me when we passed each other in the hallway, which I told my new teacher about, and he assigned a buddy to walk with me between classes. To me, the only good thing to come out of middle school was that I was learning how to advocate for myself. I still need help from my parents, but now it’s become one of my strengths.
During high school, I sat in with my parents on all my IEP meetings. My dad reminded my team at the beginning of each meeting that we were gathered to talk about his and my mom’s favorite subject – me. Some of my classes had two teachers in the classroom which helped me a lot. I still struggled with reading comprehension and taking tests, but I started to feel supported by my teachers and classmates and I started to blossom.
I joined the swim team in the 9th grade. My coach liked to yell. I don’t think he had lots of experience with people who had learning challenges. I shut down when people yell at me. I developed an eating disorder during my sophomore year and stopped swimming before the season ended. After some therapy, I was diagnosed with general anxiety and not an eating disorder. Even now, I continue to meet with the same therapist every two weeks. It’s great to have someone besides my parents or friends to talk about my feelings and learn how to manage my anxiety. I also sang in the school choir for 3 years, worked in the school office answering phones, and helped manage the girl's basketball team. I was voted homecoming queen my senior year! I loved high school. I met my friend Lauren during my freshman year in the lunchroom on my first day of school and we still get together when we can.
How important is it to learn how to advocate for yourself in school, at work, with friends, your parents?
It’s important to speak up for yourself and let people know what’s important to you. It’s a skill that I’ve had to learn. I’m still learning how to advocate for myself, but I’ve got a strong support system in place to help me too.
Tell me about your friends? Who is your best friend, what do you like to do with your friends?
Vika is my best friend. We met at community swim classes when we were both in the 2nd grade. We also were part of the same brownie/girl scouts troup. Vika was born in Russia. Her mom adopted her when she was 7 years old and brought her to live in Saint Paul. I’m so glad she did because Vika is like a sister to me. She’s traveled with my family to our Wisconsin cabin during the summer, Glacier National Park by train, and in January we visited Disney World! She’s lots of fun. My parents love her too.
Adriana is a friend I met in kindergarten. We met again during my transition program after high school. She speaks Spanish and English, was a swimmer like me in high school, and works full time as a laundry aide for the Marion Center Senior Living Center in Saint Paul. She loves to travel and eat all kinds of food.
Eleanor is a friend from my high school swim team. She was also in my transition class after high school. She love’s spiderman, riding her bike and getting together with her friend Lilly. She works at the Como Regional Pool in the summer and is looking for a job in Saint Paul Public Schools. Her mom is the art teach at my high school.
I have many other friends and lots of cousins too. I love hanging out with them every chance I get. I’m the youngest cousin of 11 on my mom’s side of the family. I have lots of cousins in California too, but we just don’t see them as often.
What is your favorite book, music, movie, color etc.
My favorite book is Agatha Christie’s ‘Go Back for Murder’. I love a good murder mystery. I’ve watched almost every episode of the Midsummer Murder Mystery series on Acorn TV. My mom says they must be THE worst detectives ever. There are always 3 murders before they solve the crime.
I love all kinds of music too. My playlist includes Kelly Clarkson, Selena Gomez, and lots of YouTube artists I love to sing too. My parents bought me a karaoke machine for my 21st birthday. We all like to use it to sing our favorite songs.
My favorite movies are anything from Marvel. But I love the Sisterhood of the traveling pants and musicals like Mama Mia 1 and 2.
Blue is my favorite color but I still love purple. I’m over my pink phase.
What are you most passionate about?
I’m passionate about kindness. On my 20th birthday I decided to use some of the money I earned from selling my cookies at church to fund 20 random acts of kindness. I left money and an encouraging note in someone’s lunch box at school. I left bus fare and an encouraging note at the bus stop. I gave a really big tip to our waitress on my birthday. I donated money to the Dorothy Day Center in Saint Paul to help take care of the homeless people that use their services and many more. I didn’t want people to know it was me, but my teachers at my transition program found out about my birthday plan and nominated me for a local PACER award (which I won.) as part of their anti-bullying programming. It was during covid, so there was no banquet to receive my plaque, but I still felt very proud watching their virtual award ceremony.
Tell me about the work that you do?
I work for Saint Paul Public Schools as a group aide in the Discovery Club after school program. I work with 18 pre-school and kindergarten children. It’s a part time job, but I work every day of the week. It’s hard work and I’m exhausted after chasing them around all afternoon.
What do you like to do when you are not working?
I love to bake, dance, listen to music, color, go to movies and spend time with our friends at our cabin in Wisconsin during the summer. I love Disney Channel too.
What dreams do you have for the future?
I’m studying to pass the paraprofessional test. This would allow me to work as a teacher’s assistant and apply for a full-time job with benefits. I’d also like to own a bakery someday. I’d like to take some business classes to learn more about running a business.
What worries you the most about the future?
I’m worried about Covid. I lost my job when everything shut down and just started back to work in the fall. Even though I wasn’t alone at home, I felt alone sometimes. My parents are older, and I worry about them and what will happen to me when they are gone. My mom says not to worry about that, but I can’t help but think about this sometimes.
How do you handle stress?
In therapy, I’ve learned a lot about my feelings and the different ways I can handle stressful situations. Listening to music, dancing, and baking are just some of the things that bring me comfort and help me cope when I feel stressed.
Yes, I have different abilities than some people, but they don’t make me less than other people, they just make me who I am. I’m a kind person, I try hard to treat everyone kindly, so they treat me kindly too.