Last month I went to Washington to receive The Champion of Change Self Advocate of the year award. Recently I got a call that Senator John DeFrancisco wanted me to come to Albany so he could recongize me. So on May 11th, my parents and I went to his Albany office. He brought my Mom, Dad and I down to the Senate floor. Mr. President called out my name and brought up a resolution and read the whole thing with all the whereas’s and then Senator DeFrancisco and Senator Valesky both spoke about me, talking about how it was a National award and how I lobbied Senator DeFrancisco before I even said hello (which was not true but soon after), he was funny!
The camera was on my parents and I, that was too cool. I felt so important and really special. After the recongition Senator DeFrancisco gave me the Resolution. I was definitely excited and loving every little bit of it. Many of the Senators came up to take a picture with me and congratulate me. Senator DeFrancisco brought me into their media room to interview me about the award, Special Olympics and Gigi’s. It was incredible and I was super excited. Senator DeFrancisco also mailed me the actual resolution with signatures of all the Senators because they all voted yes for it. He also mailed out photos from that day. I love the pictures they are way awesome. He also sent out the video of me receiveing the award and then the video he made of the interview. I was truly honored and humbled to receive such great recognition.
Later that night I went to a party for Gigi’s Playhouse where we received an award that Jowonio had given the Playhouse. Again I felt really happy that I was there to accept the award and help represent the Playhouse. How awesome was
I finished with my reading class on May 5th. I had to take my final exam which was a two part final. So, the first part of the exam was to highlight and make notes which I got 100 on and took a quiz and missed two questions but I passed with an 87 on the first part. On Thursday was my second part I had to read an article then make marginal notes and combined it to make support points then make it into one paragraph. I got 100 on that. Combining both parts overall I got a 94 and passed and I believe that is also my final grade. I did keep checking the website for my grade and found it. I got an S which stands for Satisfactory because it was my last college prep course I needed. I am really happy that I passed and relieved to get that off of my shoulders. Now I can continue to work on my credit courses, so far I have 22 credits and everything else I do will be towards my degree, woo hoo! I signed up for my next course for the fall the other day.
Today was a Special Olympic track and field event in Rome New York. Took a bus full of my friends and I and my parents. My mom is one of the coaches. When we got there the weather wasn’t the gresatest it was cold off and on but the rain held off. I ran in the 50 meter race and me and my friend Mary Dorsh finished and tied in second place and we both got the silver medal. I also did the standing long jump and I was 2 for 2 getting the silver medal again, that was pretty cool. My friends also did well. I felt proud to win all those medals and pretty happy.
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!