World Down Syndrome Day 2018

          I have been writing this blog for almost five years now, and I almost always get the same reaction. People tell me how helpful I am with my brother, they ask me if I will work with people with Down Syndrome and other disabilities when I grow up, they commend how my family overcomes obstacles. These are all valid points, but they are all irrelevant to the purpose of this blog. Robb and I are siblings. We love each other. I am lucky to have Robb because he is my role model, my rock. He is the one who gives me a hug every time he gets home from school. He is the one who will come and listen to me while I practice a new song on the piano over and over. He signs to me when we are at swimming at Special Olympics practice even in the deep end just to show me how happy he is. I want to use my blog to address and contradict the idea of suffering and disappointment many people associate with disabilities. I want to stop people from ending my brother's accomplishments with "for a boy with disabilities."
          I would be lying if I said that Robb's differences do not profoundly shape our lives. They have changed the lens through which he sees, I see, and they have impacted most aspects of our relationship and how we communicate. They are the reason we sign, the reason most of our conversations begin and end with ahhh, the reason that when he gets upset, I often cannot understand, but they are also the reason we get to speak in our own special language, the reason that I can understand the subtle jokes he makes, and the reason that I am aware of World Down Syndrome Day in the first place.
          I love World Down Syndrome Day because we get to celebrate all aspects of the Down Syndrome community which always recognizes the obstacles so many people with Down Syndrome face, but also includes people's different interests and achievements. John Lee Cronin, a man with Down Syndrome, started John's Crazy Socks with his father which has expanded to offer over 1,200 different sock designs. Madeline Stuart has become the first professional model with Down Syndrome at 20. Tim Harris, another person with Down Syndrome started his own restaurant in his early twenties which continues to thrive today. And no one ends these accomplishments with "for someone with Down Syndrome."
          I know that these particular accomplishments are not the same as the ones we hope for Robb in the future. I know Robb may never live independently, and that communication right now is still a struggle, and that our goals are very different from those of the people listed above. But Robb can still reach his personal goals, he will still live a fulfilling life, he will still be happy, and so today we also celebrate the different goals of people within the Down Syndrome community and the value of each of them.
           I am not naïve. I know that there will be few people who read this, even less who care, and maybe only one person who is changed by it, but I know that if I change one person, that is one less person to continue the suppression of people in the Down Syndrome and wider disability community.  It is one less person who will tell my mother that she does not want to sit next my brother "because he is gross." It is one less person who will tell me that my close relationship with my brother is a sacrifice I am making. It is one less person to stare instead of smile when my family enters a restaurant.
          World Down Syndrome Day is a movement to change people's perception on Down Syndrome, and it continues to expand and strengthen daily. I am so happy and privileged that my family gets to help share that message.
          So without further ado....

HAPPY WORLD DOWN SYNDROME DAY!!!

A group of moms put together the following video in celebration of World Down Syndrome Day; enjoy!

Adaptive Skiing

           My family goes on trips all together very rarely. Although Robb loves planes and car rides, and we get to cut the lines with him in airports, actual trips that Robb would enjoy are difficult probably because there may be a lot of standing and waiting which becomes miserable for him. Also, things go bad quickly. And when Robb is miserable, everyone is miserable. If we are in a crowded area, and all of the sudden Robb sits down, there is little hope of him standing up any time soon. Therefore, when we find an activity that we all would enjoy we hold on to it. This year, I think we found the perfect thing to do. Robb had tried adaptive skiing before, but because he had been much smaller, this was really a test run to see how he would like it, and although we had a rough start, the experience was so much fun for all of us!

          The was it works is Robb gets strapped into a chair, and the instructors ski him down the mountain. On the first try, Robb was extremely suspicious. He had to be forced into the chair, and he was less than amused when his chair had to dip forward to put him onto the ski lift. Just imagine, my mother telling the people to go quickly so that Robb can understand what is going on while Robb yells and hits his head. The people pushing Robb believed that he would never be able to enjoy it, and I have to admire my parents for convincing them to try the activity again despite the failure.

          Fortunately, when he went back for his second session, he was very pleased and excited for the ride. He never seemed quite comfortable with the ski lift, but once on the mountain, he laughed the whole way down. He even started to put on the goggles himself to keep his face warm despite his notorious dislike of things covering his face. (He has thrown more than a few pairs of glasses out of the window of a moving car.) At the end, despite initial concern from the people pushing him, at the end they said he kept on signing "more" the entire trip whenever they asked how he liked it. All and all it was really an amazing program, and I would say that seeing Robb with a big smile on his face coming down the mountain was the highlight of everyone's trip.