The Weekend of Walks

          This weekend we had both the ASA Walk and the Buddy Walk, and all in all, they turned out great! Athletes Serving Athletes is the program in which people push Robb in 5 and 10 kilometer races. On Saturday the organization put on their own race, and all people participating in the program come together for one final event which includes a one mile walk at the end of the race. It is always so much fun to cheer for Robb as he is pushed, but I always feel a little bad when the team wants to take a picture with Robb before the race. He smiles and laughs in the car ride there, but when the race is about to start, he wants to run, not stand around taking pictures, so he always comes off a little bit irritated. Fortunately, the race started pretty quickly this time, so there was not much sitting around, and people were tossing beach balls in the air which Robb found hilarious :).
          Today, the Chesapeake Down Syndrome Parent Group hosted the annual Buddy Walk, and this year, my friend and I created a team for people from our school to come and support. We had a great turnout, and I think we showed people a whole other amazing world! For a long time, I was the only person in my grade with a sibling with Down Syndrome, but last year, another sibling joined our community! Although Robb having both Down Syndrome and autism makes things a bit different, being able to share a part of myself with someone within my school helps when faced with discrimination and ableist slurs from other students and teachers. Also, we can get more people out to fun events like the Buddy Walk, and in the end, the event turned out great for everyone. Robb was very pleased to find a perfect spot to listen to the music, and that combined with the free bananas made the walk ideal. We had a bunch of people come to be a part of this event with Robb, and we saw people from St. Elizabeth's and Special Olympics. Also, during the time we walked, the rain held out, and everyone got to enjoy the event while staying dry.
          These events remind me how cool it is that I get to be a part of this community with Robb, and how I hope to continue opening this world to other people from my school because it really is a privilege to be a part of such a great community.

Turning 18

 In a couple of months, Robb will be 18. I never realized what a big deal this is until Robb turned 17, and the lengthy process for the parent's guardianship began. Because Robb will be a legal adult at 18, my parents have to get a lawyer and say why they should get custody over Robb. If they do not, my mom would not be allowed to make appointments for him, sign medical papers for him, or pretty much do anything. My mom once called a doctor to make an appointment, and thinking Robb was eighteen, they said they had to speak with him. Luckily, that mistake was corrected, but it was a reminder of the importance of guardianship. It seems ridiculous to me that this should be an issue. Robb is non-verbal, he has autism and Down Syndrome, and my parents make all decisions for his life. In the world we live in, Robb has to be reliant on my parents, but still getting guardianship takes time and money that could be spent making other important decisions for Robb or just spending time with him. It seems ironic that they love him so much that they must lose time that could be spent with him. However I know my family is on the lucky side of things, my parents can take the steps necessary to ensure their guardianship for Robb's future, and Robb being non-verbal, it will not be hard for them in court. We are also so lucky to live in a country where we can make these decisions and Robb can get help from my parents. I think that situations like these show me what I want to do with my life. I may only be 16, but I think that if I can bring awareness to the situations family of people with special needs face, I will have a life worth living.