Butterflies for Change
advocating for inclusive communities
My parents were afraid and shocked for just a few minutes after I was born, and then the dreams started to flow: Dreams that I would go home to live with my family and be loved. ; Dreams that I would have an opportunity to do everything my sister Blair did but with extra support; Dreams that I would go to my home school with my peers and be included in general education classes. My family made plans based on dreams and not on fears.
So I went home to live with my parents and my older sister, Blair. The first year I was pretty sick because I had a hole in my heart. I gained only 2 lbs. in 9 months, and I need open heart surgery to repair my heart. My family was very worried that I was going to die. But I lived and started to grow and learn after my heart surgery.
The early years were filled with early-intervention classes where I met some of my very first friends, many of whom I am still friends with today. Life was busy and soon I had a new brother, Patrick, who joined our family. My siblings were wonderful, and I loved being with them because we had so much fun.
When I turned 3, it was time for me to attend Preschool. My mom dreamed that I would go to the same community preschool my sister went to in our neighborhood. She explained to the teachers that I had Down Syndrome and was surprised to find out that I was going to be the first child with Down Syndrome at the Preschool. That experience started my inclusion journey.
I loved school and being with lots of different kids. I went to an early-intervention program at the grade school, so I was in school a lot. Good thing that I liked it! I was the first person with Down Syndrome included in every grade, in every school from Preschool all the way through my transition years when I got a two year certificate in early childhood at our high school technology center.
Every year my family had to build their vision for me and share it with the educational team to make sure I had the same opportunities I would have if I did not have Down Syndrome. It is easy for people to see my disability first because I wear it on my face. It is natural for people to judge me, put limits on my potential and make assumptions about who I am and what I can learn because I have Down Syndrome. We found out that we always had to help people change their assumptions and ideas about me because their attitudes and expectations could prevent me from being included. People learned to see my abilities and not my disabilities.
In grade school and middle school, I was in choir, band, drama, and student council. In High School, I was on the speech team, in home ec club, on the Special Olympics basketball and track teams, in plays, and in the Youth and Government club. I went to every dance with a group of friends and my boyfriend. I was in general education classes with adaptations and accommodations. Teachers were great, but it was hard. I did a lot of homework all the time. Many people helped me succeed. I worked hard to reach my goals and so did everyone who was part of my educational team – including my family.
It was a long journey. I met so many wonderful people along the way. My classmates were mostly kind and helped me when I needed it. They did not make fun of me, and I think they accepted me like any other student in their class. I had teachers and administrators who were willing to give inclusion a chance. They opened their doors, minds and hearts to include me. I learned that if everyone works together towards a dream, amazing things can happen!
Now I am an adult, and my life is filled with exciting things. One day a week, I travel down to Chicago to the University of Illinois Dental School where I am a children’s dental health educator and assistant at the Pediatric Dental clinic. I am also working with PACE bus company as a spokesperson for "Hop on the Bus" which is a program to assist people with disabilities to navigate the PACE bus system. I am currently the Vice President of NADS (National Association for Down Syndrome).
One of my dreams is to become a television or movie actress. I have been in many plays and musicals, and I am involved in a theater group for actors with special needs. A dream came true for me because I was in a movie with Miley Cyrus called LOL in 2012. I loved working with Miley Cyrus and the other actors. I was also in an HBO documentary about a beauty pageant for girls with disabilities called “THE MISS YOU CAN DO IT PAGEANT.” That was in 2012 also. I was in a movie called Wiener Dog with Danny Divito, Greta Gerwig , Connor Long and Kieran Culkin. I was a guest actor on Shameless and Chicago Justice. Last year I played a YODA like character in a Star Wars fan film called NO EASY TARGET. I think if more people with disabilities are in movies and television programs, the world will stop judging and segregating us and they will see us as people with gifts who can participate in our communities.
I also have my own business called Butterflies for Change. I work with my mom, sister, and aunt to provide inclusive support to schools, students, families and districts around the country. I am the main butterfly because I often do a keynote presentation called “Dwell in the Possibilities” and share my inclusion story with others. I love to talk to students in middle schools and High Schools. I talk to them about what it is like to have a disability and how important it is to treat all people with respect and dignity. I encourage each student to be a champion for each other, to stand up for the rights of others, and change the world. A champion is: a person who fights for or defends a person, a protector an advocate and a warrior. I always tell them not to ever use the word retarded because it is mean and hurtful. Kids are interested in listening to my story and I hope that I can make a difference in their life.
I think God has blessed me with a clear voice so I can speak for those who don’t have a voice and help people find their own way to communicate their hopes and dreams. My symbol is the butterfly because a butterfly starts out as a caterpillar that is not able to fly and is limited in movement. Caterpillars don’t ever imagine that they can be a butterfly and fly about above the flowers. Then something magical and wonderful happens when they go into a dark cocoon not knowing what lies ahead for them. When they come out, they are all wet and crunched up. Soon they dry out and start to fly with full wings. I wonder if they ever really know what happened to them and if they can see their own beauty. We are all butterflies in the process of changing. When we finally fly with full wings, we can help change the world and make it a better and more accepting place for every person with a disability.
I have come a long way since I was born with a big hole in my heart. I have had lots of blessings and success in my life. I have a disability called Down Syndrome that can sometimes limit my opportunities. My disability makes it harder to succeed and doors don’t just open on their own for me and others who have disabilities. That is why I think it is really important to have dreams and plans for your life. I have seen many people let systems, schools, and others put limits on their potential because of their disability. It is important but difficult to find your voice and speak up for yourself. It is also hard to speak up for others.
If you are a person with a disability, and you want to live a full life and find your own voice, I would like to share with you some helpful hints that I have learned on my journey. In this book, I have included some thoughts and suggestions that I have found helpful in designing my life. Hopefully, these ideas might help you move forward in your own life. You can change from a caterpillar, find your wings, and become a beautiful butterfly that can fly with full wings.
Always dwell in the possibilities!
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