Tomorrow, March 21st, we will celebrate World Down Syndrome Day therefore I felt compelled to write something about Down Syndrome.
What is World Down Syndrome Day
What is World Down Syndrome Day and why do we celebrate it? For me, WDSD is about educating the community about Down Syndrome, raising awareness and acceptance. Yes, I will also celebrate my daughter and her friends that sport an extra chromosome but what’s really important to me is to help people to understand that people with Down Syndrome are more alike than they are different.
Receiving our diagnosis
When we first received our DS diagnosis, it was devastating to say the least. I remember having many conversations with God, telling Him that He had picked the wrong mom for this child. Though I already loved her, I was certain that I was not equipped to raise a child with special needs. I was unable to see the good in this situation. I had been taught, like so many of us, in society, that having a child who is “different” is somehow bad. After all, that is why they test for it early in pregnancies, right, so that we can “decide” to abort when we get the devastating news. That’s why the doctor looked at me with his sad eyes and told me “I’m sorry” when he gave us her diagnosis.
Sorry, sorry!!!?? I’m the one sorry, sorry that he never had the chance to meet my daughter and see how wonderful she really is. I’m the one that is sorry, that he was never educated about all the things that our children with Down Syndrome are capable of. What did have to be sorry about anyway? Sorry, that his years of education didn’t teach him to have a heart, to see the good in people, not the diagnosis.
Nothing Down About it
Heres’ the thing, Down Syndrome is not a bad thing. What’s unfortunate is how others see people with Down Syndrome. They see a diagnosis. What they see is different. They see the things that they can’t do. How would you feel if someone looked at your typically developing child and said, Oh it’s, taking him a bit longer to learn to walk, he’s probably never going to live on his own. Oh, he has brown eyes, I’m sorry, he’s probably never going to go to college. Oh, her speech is a little delayed, she’s probably not going to be able to get a real job. Red hair, uh oh, we are going to go ahead and separate her from her peers because she is a little bit different.
That may sound absurd to some of you, but that’s what it feels like when people try to predict my daughter’s future based on an extra chromosome. I could not predict any of my children’s future at 5 years old. My two typically developing teenage boys are not anything like I thought they would be when they were 5. There is no way to predict any child’s future at such a young age. So, why limit them?
Fighting for inclusion
It’s beyond frustrating to me as a mom that I am already having to fight for my child’s education and for what I know is best for her. I’m not in denial about what she can not do but I choose to focus on what she CAN. And that is what I want the world to focus on. We are all different and we all learn at different speeds, different levels and in different ways. That doesn’t make one person better or worse than another.
Separating children with Down Syndrome from their “typically developing” peers only reinforces that they are “different.” How can I raise my daughter to believe that she is equal and deserving of the same things as everyone else, when the “system” continues to want to separate her. And don’t we all know that children learn best from their peers? So, essentially by separating her, you are limiting her education. And throwing her in with her peers for Physical education, music and art is NOT enough!
I can’t help but wonder what would happen if I never put Down Syndrome down for a diagnosis for her when entering school. If she was just a typical student who was falling behind. No label, no diagnosis- how would she be treated? Yes, I know she’s also non-verbal but that doesn’t mean she can’t communicate. She happens to be very smart and capable. What happens when you have someone come to a new school and speaks another language? Would you place them in a classroom with others who do not speak the language? No, You find a way to communicate and help meet their needs.
A mother’s wish
On this World Down Syndrome day, what I want more than anything, is for the world to see my daughter and others with Down Syndrome for who they are, not a diagnosis. What I want is for society, the school system, educators, and all people to stop trying to predict their future and to meet them where they are. Ultimately, we all just want to be loved and accepted for who we are. I want my daughter to always be proud of who she is because I sure am!