Today is World Down Syndrome Day (WDSD), a day when people from around the world unite to advocate for the rights, inclusion, and well-being of people with Down Syndrome. Recognized by the United Nations in 2012, WDSD creates awareness of what it means to have this disability and the vital role people with Down syndrome play in their communities.
This year's theme is 'With Us, Not For Us'. The intention is to convey that people with disabilities also have the right to be treated fairly and have the same opportunities as everyone else.
In honor of WDSD, Fox Financial Group celebrates the life of Harper Wagener. Read below the Q&A between FFG and Laura, the mother of Harper, as she discusses the challenges, blessings and common misperceptions of having a child with Down Syndrome.
Harper with her brothers, (from left) Logan (10th grade) & Owen (7th grade)
Fox Financial Group: How do you and your family acknowledge/celebrate World Down Syndrome Day?
Laura: We have celebrated differently each year and a little more quietly as Harper has grown. When she was younger, I posted many things on social media leading up to WDSD, as I wanted to shout her worth from the rooftops! As Harper has grown and developed her own relationships and her own voice, she really is her own best self-advocate.
We will certainly wear our blue and yellow on Tuesday in honor of WDSD and we will donate to Ruby's Rainbow, an organization that provides scholarships for students with Down Syndrome who are attending post-secondary programs. Harper's school, Twin Oaks Christian School, is celebrating alongside us this year and is encouraging students to wear blue and yellow for WDSD. A book about DS will be read during Library this week and Mrs. Cordray is planning to make an announcement about WDSD! It is a great testimony to the amazing community that surrounds Harper and our family.
Fox Financial Group: What is the most common misperception of Down Syndrome?
Laura: There is a lot I could choose from here. The most amusing one that comes to mind is that people with Down Syndrome are always happy. While it is true that many people with Down Syndrome do seem to have a joy for life that is contagious, this certainly does not mean that people with Down Syndrome do not experience the full range of human emotions, just like any other human being.
Harper is sad when she feels left out, she gets angry when I don't allow her to do something she wants to do, she is afraid when she is about to get another blood draw and she is embarrassed when someone seems to be teasing her, just like any other 10-year-old. It's important to set aside misconceptions like this so that we see people with DS as complete people and not as a caricature and so that we don't become offended or shocked when a person with DS expresses an emotion that any other person might express.
Fox Financial Group: What grade is Harper in now, and how is she keeping up with her peers?
Laura: Harper is in the 4th grade at Twin Oaks. Overall, she is doing well. She loves school, her friends and her teachers. She continues to learn, grow and shatter the expectations of those around her. 4th grade is a difficult academic year, and we have hit some bumps along the way, but I am grateful for open communication with her teacher and the rest of her team, such that when a challenge comes along, we have been able to work together to find a solution.
Harper's teacher, Mrs. Warren, loves Harper and truly desires for her to succeed. She is a great communicator, such that we are always working toward what will be best for Harper and for the class. We've been able to see when we should push Harper and when we should add in breaks. Overall, this has led to 4th grade being a really great year for Harper.
Harper also has an amazing paraprofessional aide, Mrs. Curran, who has been with her since Kindergarten. In Kindergarten, she was with Harper for most of the day. As Harper has progressed through the grades, we have lowered that support each year. At this point, she primarily provides support during math and reading, going back over the lessons in a one-on-one fashion. This has allowed Harper to continue with grade-level work. One of the things I love most about Mrs. Curran is that she is not afraid to step back if Harper does not need her, which helps Harper to be more independent.
Fox Financial Group: Why Twin Oaks Christian School?
Laura: It has always been our desire for Harper to be at Twin Oaks Christian School. Our two older boys, Logan and Owen, attend TOCS and do so because of the commitment TOCS has to come alongside and partner with parents in the education of our covenant kids. We love that TOCS beautifully blends faith and education and has a staff who, because of their faith, see all kids as image-bearers, and love them with the love of Christ!
As Harper has grown, TOCS is not just our community. It is her community, as well. She has close friends in her class. She is known and loved by the teachers and staff. Her friends see her as a valuable member of the class and they love her well. The love for Christ that the teachers, the staff, the parents and many of the students have help them to see Harper as intrinsically valuable and it shows in the way she is a part of the community.
Students in Harper's class don't hang out with her because "it's the right thing to do to hang out with the kid with a disability." They hang out with her because she is their friend and they want to spend time with her. They see her as bringing as much to the friendship table as they do. Just having Harper in their class means that they see Harper as Harper and not as the kid with a disability. And, I have no doubt that this will have an effect as these students go out into the broader community and meet others with various disabilities.
Fox Financial Group: Can you explain what you and Greg felt when you learned Harper had down syndrome? And tell me about the blessings of having Harper in your life.
Laura: We fell instantly in love with this sweet little girl, and were ready to fight for her, almost from the start. We did have fears–fears of the things that would be more difficult for her, fears that people would be unkind to her. We also thought we would be giving some things up–a wedding for her someday, college, a good job, and independence. Psalm 139:14 screamed out to us from the pages of Scripture in those early days. But, as we’ve learned the stories of so many people with DS, we’ve seen that none of those things are off the table for her. We’ve seen that she is fiercely independent and fiercely driven, with a strong determination to learn and grow and problem-solve. It’s hard for me now to imagine her future not being amazingly bright.
The greatest blessing that Harper brings to our lives is simply her presence. She is so full of life and she lives every moment to the full. When she is excited, she is excited with all of her. When she is angry, she is angry with all of her. When she is joyful, one can hardly help but be joyful with her! Harper lives with a freedom of expression that I would love to emulate more.
Watching Harper's determination and her joy when she accomplishes something, whether it is big or small has made me appreciate and celebrate small and large victories alike. I have seen Harper work with determination both to eat with chopsticks and to score on a 9' basket in basketball. Both accomplishments were met with true joy at accomplishing the goal that she had set. And, when Harper celebrates a victory, it is hard not to celebrate with her.
Fox Financial Group: What are her hobbies outside of school?
Laura: Harper loves sports, especially soccer and basketball. She played CYC basketball for the first time this year! She enjoys reading, watching and singing along with musicals, singing in our church children's choir and playing outside with her brothers. She has friends with whom she does "drawing club" where those participating draw pictures for each other. She plays at recess with students in her class and also with students in other classes, usually basketball!
An unexpected friendship blessing grew out of our morning carpool situation. Harper's friend Sara has a brother who attends high school with Logan, my eldest. Sara's family drives the boys to high school, which starts thirty minutes earlier than TOCS. This means that the girls have hang out time at our house every school morning, With two older brothers, it has been great for Harper to have "girl time" with a friend who will play Barbies or American Girl dolls.
Fox Financial Group: Do you have a favorite (and trustworthy) nonprofit to which people can donate if they feel led?
Laura: As I mentioned earlier, our favorite nonprofit is Ruby's Rainbow, an organization that provides scholarships to students with Down Syndrome who are attending or seeking to attend post-secondary programs.
As far as local organizations go, two come to mind. The Maren Fund provides academic and other programs for students from early childhood through college age. They use research-based strategies for teaching students with Down Syndrome to supplement what students are learning in the classroom. Harper participated in a number of their programs in her early childhood and early elementary years and she benefitted in both her reading and math skills. The Pujols Family Foundation has been a great support for the Down Syndrome community in a variety of ways.
Fox Financial Group: How long have you and Greg been married?
Laura: We just celebrated our 21st wedding anniversary on March 16th.
Fox Financial Group: What is Greg’s position with Parkway now?
Laura: Greg is the Coordinator of Student Discipline for the Parkway School District, a position he has held for the last 5 years.
Fox Financial Group: Will you please tell us about your professional background and what you are doing now?
I practiced law for 10 years, working for the Missouri Attorney General’s Office, before deciding to stay home full-time after Owen was born. When Harper entered Kindergarten, I decided it was time to re-enter the workforce in addition to my volunteer responsibilities. I continued to teach Women's Bible Study at Twin Oaks Presbyterian Church, but added substitute teaching at Twin Oaks Christian School and discovered a passion for teaching middle school students.
I continued working as a substitute teacher for 4 years, both at Twin Oaks Christian School and at Heritage Classical Christian Academy, where my eldest attends high school. This year, the Lord opened the door for me to combine all of my previous experiences in a classroom setting, and I am blessed to be teaching Middle School Bible and Middle School U.S. History at Heritage. It has been a challenging year, but I love teaching and my students!
Fox Financial Group: What is the Wagener family's favorite vacationing spot?
Laura: It is hard to choose a favorite. We do love the beach and have developed a love for Edisto Beach, South Carolina. But, any beach with sun will work for me. However, we just completed a vacation to the Smoky Mountains, and we loved it! We spent our days hiking and exploring (and even a day at Dollywood), and it is a vacation we would love to repeat! The mountain views were beautiful and spending time being active as a family was a great joy!
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