October is an important month for Lila’s family. This month, they will share a little more excitedly than usual about how proud they are of Lila because... (drum roll please)... it’s Down Syndrome Awareness month!
Down syndrome has a negative meaning to many. It seems to only represent limitations and stereotypes, but Lila has taught those near to her that she is not “limited.” She has different abilities than expected. Some of her abilities surpass those of her “typical“ family members!
Unfortunately, some are still unable to see that a world that’s kinder and more inclusive for people with Down syndrome is better for ALL of us.
When Lila’s mom and dad found out before she was born that she would have Down syndrome, they were devastated. They thought their dreams for their baby girl would never happen. But that’s only because they did not know much about the diagnosis. The doctors told Lila’s parents how limited she would be, but they didn’t say anything about what Lila could achieve. The doctors even gave Lila’s parents the opportunity to terminate her life.
Thankfully, Lila’s mom and dad believed that Lila was a healthy baby who should be given a chance. She’s been defying expectations ever since her first cry.
How DS affects Lila
Lila does have some things that make her different. She looks different, and she has some health issues that others might not have.
Lila has experienced some hard things like open heart surgery, but she just sees them as a part of her life. She is a resilient little girl. Some may say that she is “suffering” from Down syndrome and the conditions that accompany it. But Lila seems to experience life so fully that it even impacts those around her. Everyone near her has to “stop and smell the roses!”
People with Down syndrome are different, but they do things that everyone else does and have similar likes and dislikes. They have jobs and get married. Lila loves blackberries but really dislikes being hot. She likes to color, but she doesn’t like to be told “No.” Who does?! Her family has high hopes that Lila will grow up to do a job she loves and live surrounded by friends and loved ones.
Lila isn't defined by a diagnosis of Down syndrome. She has an extra 21st chromosome, just like she has blue eyes. Lila is defined by her personality - her determination, her sweetness, her strength, her likes and dislikes - not by what medical books say.
Lila’s future - Let‘s make it brighter!
Just like others do, Lila wants to grow up and be able to live independently. She wants to be included. The success of her goals depends on how the world around her responds to her, which is why her family works hard to show that she's more like others than different.
The general world perspective of Down syndrome is negative because of the information available. That's why her friends and loved ones are working to change the world, to show that the medical books can't predict everything.
Change is hard, and it takes time. As recently as 40 years ago, people with Down syndrome were starved at birth. But people stood up to that practice, and slowly this world was changed for the better.
You might have figured out by now that this is about more than awareness. Lila needs you to take action.
This month, let‘s work hard to change the negative view some might have of Down syndrome. Let’s flood social media with the accomplishments of people with DS. Let’s make accessible resources for new parents, teachers, and community leaders. Let’s work to change laws that prevent transplants due to disabilities. Let’s encourage employers to hire people with different abilities. Let’s facilitate community supports and inclusion in classrooms.
Each and every person who is engaged to change his or her negative views of Down syndrome is one step in changing our community, our country, and our world for the better for ALL of us, not just people with Down syndrome!