Happy World Down Syndrome Day! Today we celebrate the lives of those with Down Syndrome. Why today? We celebrate today because Down Syndrome occurs when there is an extra copy (three) of the 21st chromosome, hence 3-21. Pretty cool, huh! It’s kinda crazy the uproar that one little extra chromosome can bring. Like that one extra chromosome some how makes a life not worthy? It’s true, there are still people in this world that don’t believe that people with Down Syndrome’s lives matter. In fact, in the US, the termination rate for those mothers who get a confirmed diagnosis of Down Syndrome is about 75%. That’s a lot of babies not even given a chance, all because of one tiny chromosome.
Why we celebrate WDSD
Those alarming statistics are exactly why we still have to continue to celebrate this day. It’s unfortunate really, that we even have to have a day like this. The truth is, I’d like nothing more for my child to be treated like any other child and not need a day that is just about them. But the reality is, is that there is still so much work that needs to be done. We celebrate this day to bring awareness to Down Syndrome and to educate and advocate for our children and adults with Down Syndrome. We have to celebrate this day so that my child can grow up in a world that accepts her differences and her challenges and loves her anyway. Celebrating this day is about showing the world that people with Down Syndrome are much more like the rest of us than they are different. It’s also showing the world that our differences are what makes us each unique and wonderfully made.
Is raising a child with Down Syndrome Challenging?
I’d be lying if I said that raising Stella doesn’t come with challenges. It’s hard having a child that is non-verbal. Stella has the same needs and wants as other kids her age but she has a much harder time communicating that to us. Imagine that for a minute! What if you were sick, had a headache, were hungry, sleepy, scared, just wanted to go home, etc but you couldn’t tell anyone. How would you react? Cry, Yell, get angry, kick, scream, run, lie down… That’s hard on all of us.
But when I really sit back and think about the challenges that I go through with Stella, it is much more about other people. It’s about the expectations or lack of expectations that others put on her. I’ve gotten use to the stares and random snide comments made by other kiddos or even adults, for the most part. Currently I’m finding the pre-judgment based simply on her diagnosis a little hard to swallow. The fact that people still think that she needs to be segregated from her peers, in school and extra curricular activities is like a punch in the gut.
Here’s the hard truth, Stella and all kids, for that matter, will only live up to the expectations that you/society places on them. If you put my six year old in a dance class with 3 year olds because she can’t quite keep up with the other six year old, guess what she will do? Yep, she will act like and do what a 3 year old does. But if you place her in a class with other 6 year olds, she will at the very least, try to keep up with them and do what they are doing. And if she isn’t doing exactly what the other 6 year olds are doing, why the hell does it matter?! Why should we expect all kids to learn and act in the same manner? Learn to teach to the individual child!
Advocate like a mother
Being an advocate for Stella is the most challenging part of raising a child with Down Syndrome. It is mentally, emotionally and physically draining to have to constantly prove my child’s worth to others. I’ve realized over the last 6 and a half years how much I truly took for granted raising my “typically developing” boys. Side note: I hate those words “typically developing!” What the hell is typically developing anyway! We are all different! Anyway, I digress. You do take things for granted, like getting to choose what school your child will go to, which soccer team they will be on, who will hire them when they get older…
What I want is for all people to see Stella’s value. I want people to presume competence. My wish is that we didn’t have to have a special day (other than her birthday) to celebrate her. Instead, I wish that she was seen and accepted like any other child. What I would love is to not have to fight and advocate for her to receive the same education that her brothers were able to get so easily.
Stella is loved and accepted by so many. We are beyond blessed! But there is still work to be done! So, instead of getting angry, I’m just going to keep on educating, spreading awareness and advocating for her. I will push through the tears and heart break and show the world what she is capable of when treated with respect and presumed competence.