The Other Side
For the few of you guys reading this out there who may not know, Down syndrome is not the same for everyone. There are incredible stories out there about people with DS accomplishing things I will only dream about accomplishing, but there are also people like my brother who probably won't make headlines anytime soon I predict.
We call him Bubba, don't ask me why, but that's how it has always been. He is the light of my life. He is mostly nonverbal at 15 years old. He still has accidents, and his favorite shows include Barney, The Wiggles, Spongebob, Sesame Street, and Jojo's Circus on occasion. He loves to watch football and basketball with my dad and brother, and he likes to sit and watch So You Think You Can Dance in the living room with me. He does the best impressions of all his favorite characters. He does the Elmo laugh so incredibly well it amazes me, and he can mimic Cookie Monster like no one's business. He loves to reenact Spongebob episodes changing his voice to match each character's line. He is so incredible. He surprises me with how much he retains and remembers. Like, our sister was singing Bad Blood by Taylor Swift the other day and come to find out, he knows pretty much that whole song.
He is extremely smart, but he is also extremely stubborn. He does not like to do things he doesn't want to do - how many of us really do? He gets frustrated a lot more now that he is older, because he is realizing how hard it is to express himself or tell us exactly what he wants. The hardest part about him being nonverbal is when he is sick; he can't tell us what's wrong or what hurts.
Now you know, some of the best and worst parts of having a dual diagnosis of DS and autism. It sucks a lot sometimes, trying to figure out new ways to communicate. Autism screws up our days sometimes, but autism has also taught us the most about our Bubba.
I think people are mostly scared. It's really not that scary. And I don't mean that like a friend trying to convince you to watch a scary movie. Bubba has DS and autism and it is fun most of the time.Don't get me wrong it can be hard work. Maybe it's that people are scared of the work? For newbies it's really like learning to walk again. You will stumble and fall a lot at the beginning. You'll be really clumsy. But, eventually you figure it out. Of course, you'll trip again - who doesn't trip when they walk now? You can get distracted and run into the corner of the table or stub your toe on that dang coffee table over and over until you figure out you just had to move it half an inch to the left. I can't tell you exactly what is going to happen because - spoiler everyone in this world is unique. Some things that work for me and my family probably won't work for you, and that's okay.
I'm just the big sister. People might be scared of what DS will do to their family, but all it ever did for us was bring us closer. We are all strangely close. It brought in this crazy kind of love that is super contagious and intense. It's a seriously intense love. It pushes us do things that people couldn't imagine doing for another. Spending so much time on learning to feed themselves and little things like that. Celebrating little things most people don't think twice about. It's super special, and it teaches you how to appreciate everything. I can't imagine what my life would have been like if we didn't have DS in it. His smile cures me of anything. The way he loves us is just so pure and unfiltered. It's like nothing I have ever known.
