“200 million people across the world living with an intellectual or developmental disability are not broken. What is broken is the lense through which we view people with disabilities.” – Amy Wright, 2017 CNN Hero of the Year
Amy Wright is mother to two children with Down syndrome. Wright used her experiences with Ds as the basis for a business venture called Bitty and Beau’s Coffee Shop. The business, which now has three locations in the Southeast, employs people of all abilities and helps them reach their potential in life.
Milestones matter for children and their parents. Roll over, walk, use eating utensils, talk, read, dress themselves, and on to graduating from high school, going to college, living independently, etc. For parents of a child with Down syndrome, these milestones, and what the future may hold, can look like Mt. Everest.
Because of specific challenges associated with Down syndrome, babies will likely experience delays in certain areas of development. However, they will achieve all of the same milestones as other children, just on their own timetable.
In monitoring the development of a child with Down syndrome, it is more useful to look at the sequence of milestones achieved, rather than the age at which the milestone is reached. I finally realized that and learned that I need to take each day/week/month and celebrate where we are; focus on what Ansley CAN do, not what she can’t do yet.
What does her future hold? If you ask Ansley, she will tell you that she is going to college. When she was born, the Doctor who confirmed her diagnosis of Ds told David and me, “The only people who will hold her back in life are YOU.” We will never forget that lesson. To support her in her abilities is the most important thing we can do for her as parents.
People who have Down syndrome hold jobs, attend secondary education, live independently or in group settings, and have meaningful relationships. We want our daughter and all others with Down syndrome to live in a world that understands them a little better. We want them to live in a world where the focus is on their abilities and not their limitations. We want our children to live in a world where opportunities abound.
“My grace is sufficient for you. For my power is made perfect in weakness.” 2 Corinthians 12:9
About the author: Susan Lewis Ellis grew up in Habersham County. Her parents are Rev. Furman and Jeannette Lewis of Clarkesville. Susan and her husband, David, are the proud parents of daughters Lila and Ansley. The family lives in Venice, Florida. In observance of National Down Syndrome Awareness Month, Susan wrote a series of articles for Now Habersham about her daughter Ansley. You can read all of her articles by clicking on the links below.