Down syndrome is caused when a person has three copies of the 21st chromosome — which is why March 21 (or 3/21) is recognized as World Down Syndrome Day. My family celebrates it in honor of my seven-year-old daughter, Brianne. She brought an incredible amount of goodness to our lives; I’m ever thankful for that extra chromosome and the journey it set us on.
Brianne’s Story
We learned that Brianne had Down syndrome when I was 16 weeks pregnant with her. I was terrified because I had no current information about Down syndrome and no idea what it really meant. I quickly took to Google, which provided resources on the many challenges people with Down syndrome face: heart defects, thyroid conditions, cognitive delays, speech delays, low muscle tone, and on and on.
But I also found encouragement that — with modern medicine, early intervention, support, and encouragement — people with Down syndrome are achieving great things. One of the most comforting things to me was seeing pictures shared by proud parents of children with Down syndrome. These pictures showed adorable children participating in typical activities like playing at the park, messily eating cupcakes, and splashing in puddles with friends.
Today, Brianne is a first-grader in an inclusive school setting where she has made friends. She participates in tap and ballet, loves to sing, is an adoring big sister, and is a treasured and loved member of our family who continues to show us her many abilities. I am ever thankful for the many resources and support available that have made our journey in the world of Down syndrome such a positive experience.
A Plethora of Resources
With early intervention, high expectations, love, encouragement, and the help of numerous organizations, people with Down syndrome thrive today. Here in north Texas, we are lucky to have a plethora of resources at our fingertips. Local organizations Down Syndrome Partnership of North Texas and Down Syndrome Guild of Dallas offer a full calendar of social events to connect with other parents. They also host educational offerings and provide various programs for people of all ages with Down syndrome.
We were incredibly lucky that Brianne attended KinderFrogs School at TCU, an early-intervention program for children ages 18 months to six years, most of whom have a developmental disability. KinderFrogs prepares these children to be included in a typical Kindergarten class and arms them with the skills to succeed. One of the most exciting resources that will be in Dallas this summer is the National Down Syndrome Congress Convention, where thousands of people from all over the world will gather to hear from the leading experts on topics that span the lifetime of someone with Down syndrome.
We also found numerous Facebook groups that connect local parents. These groups provide members with a way to access recommendations for doctors and therapists or to find suggestions and tips when challenges arise. We are most certainly not alone on this adventure.
Some of the most talented people I have ever encountered lead organizations working to ensure people with Down syndrome have the opportunity to lead meaningful and healthy lives. Here are a few of these many powerhouses:
- National Down Syndrome Congress
- Down Syndrome Diagnosis Network
- LuMind Research Down Syndrome Foundation
- Down Syndrome Affiliates in Action
- Global Down Syndrome Foundation
- International Down Syndrome Coalition
Spreading Awareness
Despite all these resources and efforts, we still encounter strangers who say something that shows they have outdated beliefs about Down syndrome and no idea how capable people with the condition can be. I try to meet these moments with grace and understanding and use them as a chance to educate, but I long for the day when they no longer occur. There are still far too many stories of parents fighting battles for their children to be included in school settings and to be provided with the education they deserve — but more and more success stories are told, and for that I am grateful.
Each event planned for World Down Syndrome Day is an opportunity to spread awareness and acceptance. I am thrilled that the Down Syndrome Partnership of North Texas will light up downtown Fort Worth’s Sundance Square Plaza in blue and yellow on March 21 from 6:00 – 8:00 p.m. This will be not only a time for families and friends to come together to celebrate and dance the night away, but also a wonderful opportunity for people passing by (who may not know anyone with Down syndrome) to catch a glimpse of something truly spectacular.
It is a wonderful time to be involved in the life of someone with Down syndrome. I know we’ll still meet hurdles and hardships. But progress is made every day to show the world that people with Down syndrome are capable of leading meaningful lives, contributing to society, and bringing a magical element to the world around them — if we only give them a chance.
The Fort Worth Moms Blog hosts 20 Neighbor Groups via Facebook, including the Moms of Special Needs Tarrant County. These groups are free to join and offer online and offline opportunities to build relationships and gain resources from other moms in the area.
Adrienne is happily married to a rocket scientist (they just celebrated their 10-year anniversary!) and is mom to three amazing children. Her days are filled with chaos and love. She works part-time as an engineer and has big plans to write a best-seller and retire on a beach. Follow her on Instagram, or you can visit her neglected-but-hopefully-to-be-resurrected-soon blog at www.sullivanfamilyfun.blogspot.com.
