Manager of Grassroots Advocacy that’s me!

I just started my new job with the National Down Syndrome Society and I absolutely love it. I am the Manager of Grassroots Advocacy. I go to Capitol Hill to briefings, meetings with staff members. On our new website that was redone I will have my own podcasts for Kayla’s Korner. I have done two podcast tapings so far. I have been making phone calls for our new and annual adult summit coming up as well as the Buddy Walk on Washington. I wenr into a meeting with one of my colleagues and when we came out of it we had VIP hockey tickets. That was an awesome night. Khadijah from our NY office spent time with me, teaching me how to use the Metro. I am now taking independently. I kind of like it. I have spent some nights on my own at Sara’s house and figuring it out as I go. It’s not that bad. I really love my job but I have been missing my parents, so when I can, I text and call when I get the chance FaceTime too. I feel like I am really helping the Down Syndrome community and all individuals with Down Syndrome and all individuals that are Differently Abled. I feel like I am giving back to the community and I love the feeling. Right now, I am home for Thanksgiving but I am able to work from my house so it is a win win. Just trying to get over being sick with the 24 hour bug.

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Moving and Saying Goodbye

This has been an emotional time for my parents and I. At the end of October my parents gave me a going away party, boy was that fun. They invited about 100 people to Twins Trees for pizza, salad and wings.

After that it was saying goodbye to my jobs, Paparazzi for 14 years, Modern Mallt and my internship at Congressman Katko’s, that was hard but they all wished me well.

Then October 28th my parents drove me to Washington, we dropped off my clothes at Sara’s and I went back to the hotel to spend the night with my parents. The next morning I was supposed to go to the Baltimore Buddy walk with Sara so my parents were going to leave me off by nine. The BBC had asked Sara if they could film our goodbye for a story they are going to do on me. I was not happy with that but consented because they would turn off the camera for our real goodbye. It took so long that we missed the Baltimore walk but the reporter was so nice it was ok and he left before my parents did. Boy was it hard when they left I stood behind the door and cried. They said they really had a hard time also.
Later Sara and I took a walk through the neighborhood to show me around to get my bearings, we had brunch and had dinner planned that night with the family whose son was asked to move from the Emergency row on United airlines. They were very nice. I don’t think I will be posting as much until I can get settled in.

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Bowling and getting ready to move

Last Saturday October 14th, I had a bowling competition for Special Olympics. We started bowling around 1:00 and ended around 3. I came in 3rd place. I bowled two games my first game was 86 then I bowled 96. It was fun and that night we had our Special Olympic Halloween dance. I danced and had a good time with my friends. This week my Mom and I will be going through more of my clothes and other things figuring out what to take with me to Washington. Right now I am going to be staying with Sara so I will just bring clothes until I actually move into my own apartment down the road. It’s getting real now less than two weeks away from me leaving, wow!

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Bridge Street Live

This morning I went on Bridge Street Live, I was invited there as part of Down Syndrome Awareness month and to talk about my upcoming job. Here is the catch, yesterday I had two wisdom teeth that had to be removed. It was an unexpected surgery, I went in for my consultation and because I was moving asked Dr. Fallon if he could just do it then, so he did, forgetting I was going to be on tv. At first I didn’t know if I was going to make it for the interview but Dr. Fallon said they came out pretty well and that I should be able to make it. I did make it after icing down my cheek. At the interview we talked about DS Works, End Law Syndrome, moving to Washington DC and pursuing my job of being The Manager of Grassroots Advocacy for the National Down Syndrome Society. It went very well but I did have to assure everyone, that I still bleed orange, I am a Syracuse fan,I will never be a Hoya fan!

Here’s Kayla’s interview from earlier today on Bridge St. She talks about her new job, Law Syndrome, DS Works and Down…

Posted by Patricia Galuppo McKeon on Tuesday, October 10, 2017

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NDSS Washington Summit

Last Sunday October 1st, I went to Washington DC for the NDSS Leadership summit and it was awesome. On Sunday I was helping to register people for the events for the following days. As part of the staff of NDSS I went to the Buddy walk that morning in Virginia. I didn’t walk I was more helping staff the event and accompanying Sara Weir the President. I was wearing a lanyard for identification. I was told to trade it in for an official NDSS staff pin and shirt. It was awesome. That night we went through Gettysburg. The first thing we did was a meeting about leadership and how to be a good leader. Then got a bus tour and went to the Battle of Gettysburg and got to walk around, taking pictures. It was pretty cool! I was able to meet Sean and Megan from Born this way. They were awesome to hang out with, fun to talk to and be with. On Monday the staff helped the registered families to come into the panel discussion and brief meetings. Sara started out with her presentation. I also got to speak about my new job being a Manager of Grassroots Advocacy. We then had a panel discussion that talked about employment. It went awesome. After that we got to hang out for awhile. That night we had C21 which stood for Chromosome 21. It was a pop up restaurant, where all of us with Down Syndrome got to staff it. We were servers, bartenders, host, and chefs. We did really well. We servers had our tables, we took orders and we ran food to tables. It was so fun and at the end of the event we had a short program where we showed a short video of Law Syndrome and why it holds us with Down Syndrome back. Congresswomen Cathy McMorris Rogers spoke and the new chair Gordon Spoor of the NDSS did as well. After that a huge group of us went across the road and got to hang out with the filming crew. They were filming us during the entire event that night. I was filmed in a close up. That was fun and I liked being a server. We had to dress like servers in an elite restaurant. After the restaurant a huge group went out for appetizers and drinks. We got back to the hotel late after taking an Uber back. The next day we all went to Capitol Hill and a congressional breakfast, then split into our meetings. Most of my meetings were with staffers. My first meeting was with Congressman John Katko, we got to talk to him for a good while. Talked about moving to DC, which I am doing within a couple of weeks. He said that he would take me out to dinner until he found out what I would be making and he said that I could be taking him to dinner. Then my friend Amy Allyn and I came back home together, we had the same flight going to Washington and coming back home. It was so much fun and we had a great time being traveling buddies. It was a great weekend and really nice that Sara kept introducing me as her new colleague, made me feel pretty special!

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Motorcycle ride

Yesterday, my friend from church Jack Sheehan came and picked me up at 3:30 for a motorcycle ride. We rode for an hour and a half out to Skaneateles and the ride back home was the same time frame. When we got to Skaneateles, we had burgers at Johnny Angels, took a walk over to the pier. The background was beautiful the sailboats, the sunset behind me. when we came back I felt like I was flying when I was spreading my arms wide. I love riding motorcycles with Jack.

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NYC weekend

Last Thursday the 14th I flew to New York City for the Buddy Walk on Saturday, Self Advocacy Advisory Board meeting and dinner on Friday and a Yankees game on Sunday. Let me back up a bit. I took my flight out of Syracuse which was delayed an hour and half so I got in around midnight at the Marriott Marquis. It was time to hit the hay early. On Friday morning we were scheduled for yoga but before that we went outside of Good Morning America. I got to meet Robin Roberts,took a picture with her and gave her my business card, pretty sweet! Then we did yoga with this guy Vytas and his brother. We proceeded to a staff meeting following that, then I aided in registering for the walk. I went to my SAAB meeting with my fellow self-advocates, it started at 1 ended around 4. That night we had a dinner for the self-advocate board. Later that night after dinner I was selected to go to a Lularoe event to mingle with everyone there. It was awesome meeting everyone that night. When we got back to the hotel it was time for bed. On Saturday, some of us went to Central Park to set up for the Buddy Walk and the others were in Times Square where we were able to view the slide show. It was cool to see my picture up there. I loved that. We went to Central Park following the video. I was in the front for the walk holding the banner with some of my other friends. Did the entire walk holding it. We had opening ceremonies led by Chris Wragge who I know personally from previous events with NDSS. I was also part of the program. I presented the Dan Piper award to our self-advocate. I was honored to be chosen to speak in front of the crowd to present such a great award. We hung out and talked to everyone and at 3:00 we broke it down and headed back to the hotel for relaxation, at that point we needed it. I was told to come to a staff’s room to get a dress for that night. We had a Lularoe dinner meeting with the owners. I got to say the blessing and toast. I schmoozed and talked to everyone there. I wore the Lularoe dress that they gave me, it was so cool, I got a lot of compliments on it. They also gave me leggings that I got to keep, so awesome. Dinner was fun talking to all the people, as well as having a 3 course meal. When we headed back to the hotel it was a late night but the staff of NDSS and I got to talk about earlier and everything over a glass wine. It was about 1:30 when everyone decided to call it a night, considering Sunday we were going to a Yankee game. On Sunday was more of a relaxing day at the hotel, the game was 1 and we left in a Uber around noon it was a 50 minute ride there and back to the hotel. The game was so much fun, The seats were cool at the lower level, but when it got hot and it really did we moved up to a shady level a little higher up but it was still cool. Even though they lost it was fun. Got to the airport no problem, flight got delayed again but was able to leave around midnight, got home around 1:30 Monday morning. The weekend was so much fun.

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Cortland speech

I was asked to speak at SUNY Cortland on September 11th to teachers and future teachers. I speak to them about how I learned in school and my education. I answered questions after I did my speech about my abilities and what I can do, not what I can’t do. I also showed them my video of some of my accomplishments. The class enjoyed my speech and my video. I am happy and confident speaking in front of a class or a group of people. It makes me feel important.

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NYC National Down Syndrome Buddy Walk

I have a night flight to go to New York City on Thursday the 14th. I am partaking in the NDSS New York City Buddy Walk in Times Square. My picture was one of the ones picked and will be up in Times Square.I can’t wait to see it up close and personal.
I am a SAAB member which stands for Self Advocate Advisory Board for NDSS, we are having our meeting in NYC. We will have our meetings, work at the Buddy walk and then on Sunday will be taking in a Yankee game. I am looking forward to spending time there. I will be coming home late Sunday night. The last flight of the night. I will be in a hotel not sure who I am rooming with or if I am rooming on my own. I will find out soon enough.

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Gold medal, woo hoo!

Saturday the 9th I had to get up early, my friends and I had bocce competition in Rome, NY at the Toccolana club. When we got there, we had to hurry up and wait like always. Had a brief opening ceremonies to open the bocce regional games. Megan, Brenda, Helen and I played two games and won both games bringing home the gold. My other friends came in third place, fourth place, and second place. It was great competition and a lot of fun. We all met new people and made friends with them. It was an awesome day.

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