Last night I was asked to speak at Vernon Downs and talk about Special Olympics and what it does for me. The event was for the Federation of New York Insurance Conference with a Kentucky Derby theme. It was kind of a huge crowd. I spoke and I thought it went well. After I was done I got a standing ovation. That was way cool! My Mom also spoke and she was great. My Mom is a natural when she speaks. After that I was in a couple of group pictures with a Derby hat and garlands and everything. When we finished, my parents and I ended up going to Turning Stone Casino spending money and gambling a bit. It was a good night and I feel important when I deliver a speech.
Me and my parents were heading to the airport on Sunday April 10th the day after the Gala to fly down to Washington DC. We fly standby and we saw the plane that was going to take us. But the plane was full and left and I had to get there in time for a meeting so instead we rented a car and drove for 6 hours just to get there. I was being awareded self advocate of the year and one of the NDSS staff had posted to the media that I was getting it. I got a call while we were in the car saying they wanted a short video within two hours. I had to make a video of myself and send it in. We stopped at a hotel lobby to film it because it was too noisy outside. I didn’t look my best because I was just going to be traveling and would have had time to clean up at the hotel if we flew, oh well did my best. It was on TV later that day. When we got to our hotel we were staying at we didn’t have luggage because that went on the flight we couldn’t get on. I went into the meeting with my fellow Self Advocate Advisory Board members and Self Advocates Being Empowered group and attended the meeting the way I was not in business casual like I was supposed to, hey I made it in time for the meeting. My parents went back to retrieve our bags and came back. After the meeting I was able to change and me and my fellow board members went out for a nice dnner to celebrate a birthday. After dinner that night we just hung out at the lobby for a little bit and mingled.
On Monday was the Self-Advocate speak out luncheon and it went pretty smooth. SAAB was making their presentation as well as the SABE group. We presented our slideshow and discussion and took a group photo. Then it was time to head into the main trainning where I met up with my parents and my delegatoin to talk about the following day up at the Capital for our Hill day congressional meetings. It was kind of long but infomative. I met this nice gentleman named Elijah and he was kind of shy at the lunch. That night was our SAAB social and dinner. There was dancing and I danced with a bunch of friends inlcuding him. I got fomrally introduced as a board member. That was prety awesome! Elijah was also being awarded the same honor as I was self advocate of the year. He was really nice and sweet as well as his dad. I met very nice people and handed out my business cards.
Tuesday was Captial Hill Day and I had my meetings to attend to first stop was at Congressman Katko’s office and that was to cool. I got to sit at his desk and it was perfect for photo opportunities. We got down to business and asked them to ammend the Able Act and make it the Able to Work act. We had a couple of asks that we wanted him to pass. I also made a friend Valorie who looks a lot like me. WOW!! I know most of the staff in his DC office and talked to them and I felt important and pretty excited. He may be attending our Buddy Walk here in Syracuse, he has nothing pending that day so far. Well see what happens. The New York Delegation went to Senator Gillebrand’s office and Senator Schumer’s office and asked them to ammend the same bills. Senator Schumer came out of his office for photos and he said that we will see him at the award ceremony. After the meetings was over it was time for the award ceremony where I got my plaque for being named Self Advocate of the year. I did my speech and it went well. I felt very important and over the moon excited. It was the best moment being honored that day. I watched many people get their award as well.
That night we actually had confirmed seats on our flights coming home. Thankfully it worked out just fine. We got to Boston and from there back home to Syracuse. It was around 9 when we got Bella home from the dog place and kicked back and did absolutely nothing and ate pizza and wings. It was a lot of fun but little overwhelming at the same time. Wow! Everything went well except for getting sick in the process, I had a stomach bug the night before the day on the hill but I rallied as my parents say and I got it under control. All is well that ends well. Since I got home, someone sent me a post on Facebook of an article done about me at Onondaga Community College, very sweet and also a resolution that Senator DeFrancisco wrote about me and has invited us to Albany so I can be honored there on May 11th. It just keeps on getting better, I love my life!
On April 9th was our Gala in Syracuse for Gigi’s Playhouse. It was just about an all day thing just to get ready for it. I got my hair done at Paparazzi like I always do. I got it done in a Grecian style with the braids to match my dress. Later was just relaxing until I got ready about 5:30 ish in my Greek looking dress with my jewelry. My dad in his tuxedo and mom looking good in her hot pink top and skirt. When we got to the Doubletree hotel we took a family photo. I was in a lot of pictures. I helped with the paddle raise, raised lots of money for the Playhouse. Nancy Gianni is the founder of all of the Playhouses, they are based out of Chicago. During the day she texted me and asked if I would help her with the Paddle Raise and asked me what the Playhouse meant to me. Then she told me she wanted me to come up on the stage with her and say just what I told her. She is one amazing person to know. She also told a story she likes to tell about when I went to Chicago and came in the Playhouse just about the time a new mother was asking about adults with Down syndrome, that was also pretty cool!. I had a couple of drinks. The band the Mere Mortals were playing and we all danced the night away. Me and my parents also sat with the Allyns, Dave is in the Mere Mortals. Christina and I were also recognized as the employees Site and Assistant Site Coordinator. I had my picture and a Congratulations for my Self-Advocate of the Year award in the brochure, that was pretty cool. I had tons of fun that night. They had a photo booth and I was in there a few times getting my pictures done.
Yesterday 3/21 was World Down Syndrome Day. My friends,family and co-wokers celebrated at the Canyon of Destiny Mall. We had merchants with discounts that were free to those of us who have Down Syndrome. If you went to TGIF’s restaurant the proceeds went to Gigi’s Playhouse. We had Cross Fit for a Cause and Celebrations dance studio and many raffles and prizes. All sorts of good stuff. Yesterday, was a fun filled day although tiring. I went on Bridge Street Live and talked about World Down Syndrome Day what I was doing currently and what the day meant to me. I also talked about the event last night. At the mall during the event Skip Clark was broadcasting live with 105.1 Wolf Station. He had me, Matt Dwyer the President of Gigi’s and Heather Rodriquez a Board member to tell everyone about the event and invite people to come out and support us. The turnout was really terrific and well done,thanks to all of the volunteers we had. It was a great night. All of my friends and I felt important because having Down Syndrom is important to us. It is not a sad diagnosis. We are more alike than different and I want everyone to remember that! We can do anything we set our minds to. Keep dreaming and never give up.
I just want to tell everyone about World Down Syndrome Day and what it means to me. Those of us with Down syndrome have an extra chromosome in our body. It is the 3rd copy of our 21st chromosome. Just because we have Down syndrome please don’t underestimate us we can do most things we set our mind to, we want to follow our dreams, it may take us a little longer but we will get there. We are more alike than different. So March 21st is a day set aside for awareness and to celebrate Down Syndrome 3/21 to be exact.
Over the weekend I went to a dance to celebrate with the Brody’s Buddy ride group. The room was decked out in yellow and blue our Down Syndrome colors. I danced with some friends most of the night, it was a nice party.
I am very proud to have Down Syndrome I wouldn’t change a thing. Never give up, keep on persevering. Tomorrow morning 3/21 I am going on Bridge Street Live, Syracuse and I am going to promote all of this so tune in.
When I spoke at Gigi’s Playhouse Gala in New Jersey, I met Jennifer Bustamonte from Rochester. Jennifer asked me that night if I would speak in Rochester when they opened their Gigi’s. A couple of months ago she contacted me and asked me to speak their Wine and Stein fundraising event and I agreed to do so. March 18th was the event in Rochester New York, they are getting close to finding a building. Jennifer had me and another guest speaker on her brochure. I was very excited to be apart of the program. When I spoke everyone had their undivided attention on me. They clapped and at the end I was given a standing ovation WOW! I met so many people that night and I always love that. Jennifer said that I was wanted at the grand opening of their playhouse. Board members from the Syracuse Gigi’s Playhouse were also there. I felt like I was pretty important that night and it felt wonderful. I also danced with a group of people and that is always fun.
This past two days were very exciting! I was invited to the NDSS Gala on Thursday night March 10th . So me and my parents flew out that day and spent the day there. I saw many friends that day in the lobby of the hotel I was staying at. We got there that afternoon and walked around. We stopped somewhere for a bite to eat called New York Beer. We saw a the girls from the band Mere Mortals from Syracuse that was playing that night walking on our way back from lunch. Our friend Chris Gedney was driving and yelled out to us and a friend of my Dad’s was staying near us but we never knew it until we got to NYC, it was funny being in a city that big and running in to all of these people. I also saw the Congressman and his wife Robin. A friend of mine Monique that does hair and makeup came up to my room, made me up. That night we went to the BB King Blues Club where the Gala was held. NDSS was honoring Chris Burke from Life Goes on, I heard many speeches that were very good. After the speeches and the live and silent auctions, The band Mere Mortals played at the After party. I was dancing all night. I danced with the Congressman, and Robin and some of my other friends. I also met many people and gave out business cards. I met Don McPherson. He is all around nice guy, and personable. After the after party it was time to call it a night. The next day was a long day of traveling. We planned on hanging around a little in the morning but the flights were booking up and we fly standby so we had to get out early. We got on one flight to Washington DC without a hitch but had to take a later flight out of Washington but it all worked out without a problem. My Mom was awesome she manages to get us on a flight. What adventure that was!
I was asked by S.I.Newhouse to do an interview on Bullying and use of the R word. Later that night I did a presentation up at Syracuse University on the same subjects. It seems like Spread the Word to End the Word gets bigger each year, that’s great it will be even better when noone uses the word and we don’t need to have a day for it.
Friday the 19th I went to Poughkeepsie to compete in the olympics. Let me back up for a minute. I went down on Friday morning, it was a 3 hour drive down. Me and my parents did stop along the way to eat breakfast and use the rest area, then it was back on the road. I am a Special Olympic Congress member and had a meeting to attend that afternoon. Those are kind of fun, we do some team building exercises and get to know each other, this was my third meeting. They are preparing us to speak in front of others and get other athletes involved in fitness and health initiatives. It was nice to reconnect with the other members again. Friday night me and my friends went to opening ceremonies and dnner. The ceremonies had entertainment and public speakers. Since we had to take the bus back to the hotel we were staying at my parents (coaches) had us go straight to bed considering the next day was a long day and competition . Saturday was an early start for all of us, we were up and getting ready for a healthy competition in floor hockey. We played on Stewart Air Force Military base, that was pretty neat and a huge space to use, My friends and I were going to get warmed up by exercising so my father got one of the soldiers in uniform to come over and help us out. He is a Sargent and we found out his name was Sgt. Luis Sandoval, he led our exercise. That was really fun and he had tons of energy. He was very nice and came to watch our last game. He came up afterward and told me I was good! He also sent my mother a message afterward telling us how much he enjoyed it and made his weekend, cool he made ours also! We played our qualifying game at 8:30 and lost but it was a good match. My parents were coaching throughout the weekend and went to a coaches meeting to tell us when we were playing next. We played right after the meeting. The game started out well, we had 2 goals and then they made 7 goals against us. Lisa and I goal tended and did our best. We lost that game oh well! We had a lunch break and kicked back for awhile. Then we had our second and last game, we played great we were ahead most of the game and then they started to catch up, in the last 30 seconds they tied the game at 10-10 and we went into sudden death. I was defending the goal and stopped a few shots and then Anthony my teammate made a goal and we won that game, the refs said it was the best game of the day! It was for me and my team for sure. We brought home the bronze medal, awesome!. By the end of the day we were all tired and stinky with sweat. When we got back to the hotel we all took showers and got ready to go to dinner and the closing ceremonies. I thought it went by too fast, it felt like we just got there. At closing ceremonies they had a dance and I danced the night away pretty much. I danced with a group of people Since Saturday was the last night there, my parents said we could party in the hallway and have snacks, just hang out. Most of us did but some of the others were tired and just went to sleep early. Sunday morning was kind of early but not as bad as yesterday, thankfully we got to sleep in a little bit, went down to eat breakfast and hung out with our friends and family. We waited until everyone got back on the bus and then my parents and I got in the car to leave. Another 3 hours or so back home. A great fun weekend!
If you have been reading my blog at all you know the ABLE Act passed before Christmas, I made two appointments to meet with Senator John DeFransisco and Senator David Valesky to thank both of them for signing and Senator Valesky for being a co-sponsor of the act.
My appointment with Senator DeFransisco was January 22nd. I had previously been to his office to ask for his help for the ABLE act and see him out occasionally so we know each other so I was able to give him a nice hug to thank him for helping to pass the act. I also told him about the Self Advocate of the Year award that I am being awarded in Washington DC in April. He told me that he wants to recognize me in Albany for my achievements. That is way too sweet! We took a nice picture together. He is a very nice man.
On January 29th I had an appointment to meet with Senator Valesky and also thanked him for helping passing the act as well as co-sponsoring the bill. I told him about my award as well, he said congrats and to keep advocating. We also took a nice picture of the two of us which he put on his facebook page and tweeted about it, he told me to like his page then like the picture. The picture looks great.
I really like being able to go and talk face to face with our Senators and Assembly members because it makes it a lot easier when we need to advocate for something.