Down Syndrome Awareness Month

Well, I have not been very active on here lately. I'll do a college post soon to catch everyone up on my adventures here, but for now, I'll continue my Down Syndrome Awareness series that I've been doing on Facebook. In case you've missed some of those, October is Down Syndrome Awareness month and I am obviously very passionate about this subject. 

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Until Achieve Camp, I'd never gotten to work directly with anyone who had Down Syndrome. I knew a lot about cerebral palsy, but there was only one person I knew with Down Syndrome--a lovely woman named Britt at our church who comes up to hug me occasionally--so I actually didn't have a very clear picture of what it looks like until I met Abby. She was one of my buddies in our Party Cabin, and I learned so much from her.

Oh how I miss her laugh.

There are a lot of common stereotypes for people with Down Syndrome: mentally delayed, childlike, sweet and happy, and stubborn. But it is so, so, SO much more than that. Abby is 16 but is only a few years behind mentally. Her rationale is more on the level of a pre-teen, and she absolutely LOVES to play pretend. Much of that imagination revolved around playing nurse (she was really good at that one, obviously she'd seen a lot on TV) or getting married, and she would rather play one-on-one with one of her buddies instead of participating in the group games. She is sweet and loving but also sassy, spirited, and yes, she is stubborn with a capital S. She understood what I'd say, but if she didn't like it, she'd try to ignore me, or say, "Uh, no. You're funny, Emily. So silly."  

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This was also Abby's first time coming to camp, so no one had ever had any previous experience with her. We all got to navigate her challenges together. We learned that Abby really loved our adaptive swing, and we could use this to our advantage. If she knew that she would get some swing time or one-on-one play pretend, she would be more willing to at least tolerate our group activities. And once she became friends with Rachel, Abby wanted to help her friend overcome her hesitancy so they could have fun together, and hence was willing to try even more things. These two had a lot of fun with each other. Still, if she didn't enough attention or we didn't let her have her way, she would act out and cry, sometimes not speaking to us for the whole morning. We learned we had to be firm with her and let her know that we were still in charge and she had to obey us and stay with the group. 

Abby seemed to understand pretty quickly that even though Rachel only said a few words throughout the week (most of them the same conversation on repeat), she still understood everything going on around her. 

Abby seemed to understand pretty quickly that even though Rachel only said a few words throughout the week (most of them the same conversation on repeat), she still understood everything going on around her. 

Yes, there were challenges. Yes, I was absolutely exhausted by the end of the week. Yes, I was glad that we had the opportunity to hand her off to another buddy in our group to get a bit of a break. But if I get another chance to go again, I'm definitely going to request to be her personal buddy again. I loved hanging out with her. We had an absolute blast, and it was amazing to watch her love riding the horses and go out on the river on the yolo board, neither of which we thought she'd be willing to do at first! There are stereotypes for Down Syndrome, and some of them are true, but it is not all that there is to it. These people are amazing, funny, caring, beautiful human beings created by God who deserve a chance for life.

Silly Scottie being a model. 

Silly Scottie being a model. 

In Iceland, of the 85% of women who choose to get pre-natal tests for Down Syndrome at their doctor's recommendation, nearly 100% decide for an abortion if their test comes back positive. In the US, the number was around 67% in 2011. The numbers supposedly have dropped a little since then, but not by much. In Eastern Europe, it is rare to find people who have chosen to keep their child who has special needs of any kind. Most end up in orphanages. I know, I was there. I've seen them.

Why such a large percentage? It breaks my heart. Is it because they develop slower than neurotypical children? Because they're stubborn and sometimes have behavioral problems? Because they would have a social stigma around them their entire lives, that they might be looked down upon or bullied at school? Because people with Downs are more likely to have heart or other health problems? Because they are less likely to be independent? Because they would view and act in the world differently? Maybe there's a chance that they might not talk? 

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But suppose you could look into the future of your unborn, healthy, neurotypical baby. What if you discovered that they were going to be a late walker, or they'd have a hard time understanding math? What if you could see they'd have a spirited, red-haired personality that resulted in an especially difficult terrible-twos stage or a frustrating, rebellious teen stage? What if you could see how much they would struggle in school because they would bullied because of who they are? What if you could see that when they were 16, they'd need to have an emergency heart transplant, like what happened to my friend Jesse? What if you could see that they would decide not to attend college, but instead stay and help you with the family business instead, because that's what they enjoyed doing?

What if you could see that they would need glasses or something would happen that would lead to their developing PTSD? They would view the world a little differently, need help with certain things at certain points in their life, but is this any different with other children? We don't treat people with glasses or PTSD as if they had special needs, we just become more aware of things that might be different. For example, making sure a movie is safe for your friend with PTSD to watch, that there wouldn't be any triggers that might upset them. Or knowing that your friend with glasses might have trouble seeing a 3D movie with a double set of glasses, or they'd need to leave their glasses behind if you were going to a water park. 

If you could see that all of these things would happen to your child in combination, would that make you love them any less? Does that make them any less than another, easy-going child? Does it not give them a right to live?  

Stop seeing the negative stereotypes. Stop seeing only differences and difficulties. Start seeing the humanity. Start accepting and loving. I promise it's worth it.