Down Syndrome: Everything I Wish You Knew

I remember looking through the window at this tiny little baby in a yellow hat with jet black hair peaking out from underneath. I remember only thinking how adorable he was and how I couldn't wait to hold him, not noticing the almond shaped eyes or the health complications. I remember the weeks that followed where my parents and new baby brother spent a lot of time at the hospital. I remember going to visit, although Michael and I were not allowed down their specific hallway. Never once through all of this did I think about or realize how my view on life and all that I know would be drastically impacted by my little brother and his extra chromosome.

It's funny how differently you look at life and at people through a new set of eyes. Something that my parents have said over and over to Michael and me from the beginning is, "People won't always know how to treat him, and so they will look to you to set the example. So treat him how you want him to be treated, and they will follow suit". Although that's quite a high responsibility to put on us, we both know it to be true and have taken this on with pride. What I have realized is most people have never had any close interactions with someone with Downs and have no idea what they are capable of. This doesn't come out of rudeness or ignorance, just a lack of experience. As long as others are open to learning and growing and knowing more about him, I can completely appreciate and respect that. It's okay to not know, it's not okay to not try.

But you see, if I had a dollar for every time someone stared at Josh, gave him a "mhmm" rather than taking the time to understand what he is saying, or excluded him from a conversation, I would unfortunately be a millionaire. People with Downs often have low muscle tone, and that includes the muscles in their tongue, and they often have trouble with producing clear speech. Because of this, it can be difficult to understand sometimes what they are saying. It often means just taking that little bit of extra time to invest in the conversation, which actually means the world. Please know it isn't rude to ask one or two more times what Josh is saying. He, and I, would rather you do that than just pretend like you understand or turn to ask me as if he is speaking another language. Because Josh is such a great speller and oh so smart, he often can spell words for people when they can't understand what he is saying.

Something that hurts the deepest part of my heart is when people stare. It's like no one has ever seen someone with Downs before. I sometimes get so angry that I position myself between him and the person and glare at them with eyes that could shoot fire. What is even worse is that he knows that people stare at him. When he was little, he began asking "why are they staring at me?". We didn't know what to say, so we would just tell him "oh it's because you're so cute". But no one should have to be always stared at. He's just a normal person. That's where the phrase "person first" comes from and why you should say "a person with Down Syndrome", not "a Down Syndrome person".

The moments in life when I am the happiest all somehow involve Josh. I cry tears of joy and pride when I see him worshiping and dancing with all his heart, when I think of how hard he works and how far he's come, when I see him praying for someone, when I see people go above and beyond to be kind to him and allow him to shine, when I come home from a long day and get a running hug from him, and when he cries because I am crying. Another is when I see my friends or other people taking the time to truly build a meaningful friendship with him and invest in him. Those who do this best don't do it out of pity, don't treat him like a little kid, and don't assume automatically that he won't understand. They do it because they truly want to build a friendship and love him, and aren't hesitant or nervous about the "what if's'".

My family has what we call "The Josh Scale". This "scale" has proven to be the best judge of people's character and heart. Why? Because taking the time to build a true relationship with someone with a disability requires stepping outside of your comfort zone, putting forth more effort than you may in a "typical" friendship, and showing the kindest and truest form of your heart.

What most people who take the time to do so realize is that it really isn't all that hard to be friends with Josh. It's so easy that we have affectionately dubbed him Mr. Mayor since he talks to just about anyone anywhere. All you have to do to connect with him is talk about sports, pop culture, babies of all kinds, and most of all ask questions and answer his. He actually is the easiest person I know to talk to because he will never judge you or look down on you and will always be interested in talking with you.

Having Josh in my life has been the greatest blessing. I've learned patience like I never would have otherwise. I've gained such a heart for those who learn and act differently than I do. I've seen life through a pure set of eyes. I've experienced extreme love that never gives up. I've seen the power in creating a connection. I've seen God's miracles firsthand. And most of all, I've gained a best friend.