R Word Speeches, Gigi’s Hillsborough Gala and World Down Syndrome Day

I was asked to speak at Syracuse University Special Olympic club on March 4th, On the End the “R” word and bullying. My parents and I went . Nick the intern introduced me and took care of my video. I talked about how I was bullied, called the R word and how much it hurts when people casusally use the word. I talked about my abilites and how I can do what they do it just may take me longer. The audience was great, many of them came up and talked, and some videoed me, I even autographed a hoodie for someone.

A reporter from the Daily Orange talked to me and a photographer from there also took pictures. They told me an article would be in the paper the next day. It was and it was so awesome. My parents posted it on Face Book and it got lots of likes and comments, Cool! Another thing 3 people, Derrick, Corinna, and Ashley asked if they could do a documentary of me for their class so they came over on St. Patricks Day and interviewed me and did a video. They were very nice and I can’t wait to see the finished production!

March 7th was our I have a voice 3rd annual Gala for Gigi’s Playhouse Syracuse, where I am the Assistant Site Coordinator. It was at the Doubletree Hotel. My mom and I went earlier to help set up. It included dinner, dancing and music. They played a couple of video’s. I was interviewed in one about what Gigi’s means to me. They had speakers, Bill, and Amy and they were good. The keynote speaker was Dr. Brian Skotko and he told some funny stories. We sat at a table with a good group of people, Matt and Pam Dwyer and some other people from David’s Refuge. They were really nice.

There was a silent and live auction. I think we made a lot of money for the playhouse. I had a blast!
I have been doing well in my Math class at Onondaga Community College, My professor Jason said I have a 100 in the class. A couple of weeks ago I had a test, I got a 99 and then because of the bonus work I have done, he brought it up to a 101. That is the highest grade I have ever received in college so far and I love it.

On March 10th I did a presentation at Pomeroy school of Nursing. I had been asked to speak by Mary Jo, the instructor on previous occasions. I was scheduled for that day and when she saw the article from the Daily Orange, she asked me to touch on Bullying and the R word in addition to my regular presentation. When I speak to the nurses I tell them to congraulate new parents, they are the first people they will see and can make the birth experience a happy memory for these familes. I am proof of a sick baby that has done well, it is not a sad diagnoisis. I love changing peoples idea of Down Syndrome.

March 14th was the Hillsborough New Jersey Gigi’s Playhouse 1st annual Gala. I was asked to be their Keynote speaker, what a honor! We had about a four hour drive to New Jersey. We Left after Mom and I got our hair done that morning. Gigi’s gave us a room right at the Heldrich hotel where the Gala was being held. When I say room, they really gave us a big and beautiful suite. There was a lso a beautiful bouquet of flowers, a Hillsborough mug and a nice Starbucks gift card for me when we got there. It was so nice of them.
We stopped in where they were setting up when we got there and met Carolyn and Liz before we went up to the room. I was looking very forward to meeting a lot of new people. Everyone was so very nice.

We hung out in our room for awhile until it was time to get ready. My Mom did my make up and it just came out so pretty. We got dressed and went down to cocktail hour at the Gala. They also had live and silent auctions and it was fun watching everything go. My mom bid and won a auction for a cool Vera Bradley bag and gift card that she got a very pretty bracelet with. I did my speech right after dinner. I got so many compliments, sometimes I had to stop for claps and then got a standing ovation at the end. People were coming up to me and saying how well the speech went and how perfect the message was. That was awesome.

Afterward a priest was sitting at our table his name was Father Hank Hilton, he noticed my picture in the program and asked if it was me. I told him yes. He then said he was involved with LeMoyne college, he is on the Board of Trustees. He got there after my speech but said he would come and visit me at Gigi’s Playhouse next time he came to Syracuse, he comes about four times a year. We sat with a great group at our table, they made us feel so welcome. Lauren was there with with her mother and husband and they have a daughter with Down Syndrome who has a twin brother and another boy. Carol was there with her husband and a son Jason who is 40 and happens to have Down Syndrome.

Father Hank asked me to dance, he had some pretty good moves out there spinning and twirling me around, then two others cut in and I danced all night. I danced with my Mom and the New Jersey Playhouses volunteers Rosario, Cole and Dylan and a bunch of ladies. I had a blast. I never sat down WOW! It was such a nice time. I am so grateful Erin McKinney Morris asked me to speak, it was such a great experience and so much fun.

March 21st, World Down Syndrome Day. It is a day to celebrate people with Down Syndrome like me! We raised awareness of Down Syndrome, We do it on 3/21 because it is an extra chromosone in our body. It is the 3rd copy of the 21st Chromosone. There were celebrations all over the world. In New York Citty they lit up the Empire State Building with blue and yellow lights . Other cities did the same on other buildings. Gigi’s held a party at Destiny mall, restaurants gave 21% to Gigi’s, we had raffles (didn’t win any, boo hoo) and Crossfit came and did their work out of the day for us.

I drove to work yesterday. I do it a lot for practice but yesterday was the first time in awhile because of all the snow. I felt pretty good about it because it was World Down Syndrome Day and I was driving and I go to college and I can do anything I set my mind to. I have Down Syndrome and I am very proud to have it. I would not change one thing about my life. I love my life.

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Busy times and my friend the Congressman

On Wednesday January 28th my parents and I went to New York City for the National Down Syndrome Society Gala on the 29th. We decided to travel the day before because of a snowstorm. It was funny, just about the time we were touching down at JFK one of the flight attendants asked me if I was Lauren Potter, I guess because we have the same color hair. I told her no but that I would be meeting her tomorrow night at the Gala.

Earlier that morning my parents and I went to a Special Olympics Breakfast of Champions, my Mom was asked to speak and I greeted people, my Dad schmoozed. My Mom spoke and did a great job, I couldn’t be any prouder of her. We met a lot of people and took a lot of pictures. I took one with Congressman Katko’s Chief of Staff Tom and he told me the Congressman would be at Opening ceremonies.

When we got to New York City we just kicked back for awhile, did happy hour and ran into Rob Taishoff and one of his business associates at the bar. We talked to him for a bit and he told us some of the guests that were attending. He said the Congressman would be there, I was really looking forward to seeing him again. Unfortunately he couldn’t make it after all, so I looked forward to seeing him at State games. We walked up to see the view at the lounge on the top of the hotel and the view was amazing. When we went back later for a nightcap to see the view once more at night and it was breathtaking.

This morning me and my parents got up and walked New York City and headed for the Today Show. We were outside in the freezing cold weather. I got on TV a couple of times and then one of the hosts Tamron Hall came out and made a sweet comment about my fur coat. One of my friends Heather saw me, captured it and posted it on face book. Last I saw it had 1.2k views. That was way awesome.

I had a great time in the Big Apple just walking and hanging out with my parents. We walked for most of the day and stopped every once in awhile to get out of the cold and stay warm. We stopped for lunch and grabbed a taxi and came back to the hotel.

A friend of mine Monique, (Myss Monique), comes to do my hair and makeup for the Gala every year, she is a makeup artist in NYC and makes me look like WOW! I just love her. For the Gala I am wearing a knockout gold dress, so did my Mom have a beautiful dress. My Dad looked so handsome in his tux. At the Gala I met Lauren Potter from Glee, she was super nice, then met Tim Mattheson from Animal House, my Dad was really excited about meeting him and taking a picture with him. I also met Emily Pearl Kingsley from Sesame Street, she was very nice, and I gave her my business card. I passed out my business cards to some other people also. I may have more public speaking engagements coming up. We had fun at the Gala we sat with some really nice people, Heather and Sterling Waters, Chris Gedney, Seely and Chris’s sister and her husband. During the Gala there was dancing and I danced with Mark Priceman from NDSS. Afterward we went back to the hotel rooftop bar for drinks, many of the people from the Gala were there. We finally went back to our room about 1:00 am because we had to get to sleep considering the next day we had to leave the hotel early for an early flight into Washington DC then the flight into Syracuse. We were home by noon.

On Saturday January 31st I was asked along with some Special Olympics friends to go to Sam’s Club and autograph our pictures for donations. We raised over 400 hundred dollars. We signed from noon to three. I wore my USA clothes and wore medals that I won from Athens, Greece. I had a lot of fun.

Friday February 6th and Saturday February 7th were State games for Special Olympics here in Syracuse. Friday was dinner and opening ceremonies and it was awesome. I walked in with all of my friends and I saw Congressman John Katko and took some pictures with him, his wife Robin, and some of the volunteers. He was one of the speakers and he called me up to the stage by name, while he spoke. His speech consisted of stories of how we met and how I gave him my business card when he gave me his, while he was on the campaign trail. He talked about how he learns from my determination, that was very very special to me! It was one of those over the moon exciting moments. He told me to text him and tell him how we did in competition the next day.

We played a pairing game, lost, then played our first game and lost. Our second game we were pretty evenly matched. It was a great game. We have a huge crowd watching and they were saying it was the best game of the day to watch. Everybody was telling me how well I played, I tried my best! Our whole team played well, it was a great team effort and we took home the bronze, Woo Hoo!

I texted the Congressman and sent him a picture of me with my medal and our team picture. He said that I rocked and that he was going to put it on his Congressional face book page (and he did), After the game we went home and watched the SU basketball game and then went back for dinner, dance and the closing ceremony. The the winter games are officially over for 2015.

OMG OMG, I forgot to mention a really important thing. The night of the State of the Union, the Congressman called and left me a message that he would be there and to watch for him, he would be wearing a blue and orange tie and to text him when I saw him. At the end I saw him and the President leaned over and it looked like he pointed to his tie, so I text the Congressman and asked if the President just said something about his tie and he said YUP…I was texting a Congressman of the United States at the State of the Union next to the President of the United States, OMG how could I have forgotten that I was so excited!!!

Oh and one other thing, my Mom did a post on facebook for me with pictures of me wearing my Macy’s dresses and tagged Macys as part of the Changing the Face of Beauty campaign. Katy Driscoll is trying to get retailers to use people that are differently abled in their ads. It would be very cool if they called me because I wear so many Macy’s dresses in my speeches and everywhere else. Come on Macy’s or anyone else that wants to hire me to model their clothes :)

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Holiday, Gala’s, Floor Hockey and School oh my!

Within the past month or so I have been busy with my family and my friends for the holiday season. This Christmas was about being with my friends and family and enjoying the everyday life with Christ. The same on News Year Eve. New Years Eve my parents and I went out for dinner and to my cousin Josh’s apartment for a party. I was introduced to the game of Beer Pong. I can’t drink the beer because I am gluten free but they were playing with water because so many people were drinking different things..yea me! I ended up being pretty good at it. My partner was my Uncle Steven and we played my cousin Kara and one of Josh’s roommates. They had been winning for quite a while so it was good just to keep up with them. We tied them and then they did finally beat them but I was pretty happy to do that well. It must run in the family, right Kara!

This month has been crazy with excitement building up, I am going back to school starting tonight and taking a math class, ugh I am not sure how I am going to do in the class, but rest assured I will try my best and work very hard. My Godmother and friend Ernie is my mentor for the class. I am looking forward to doing the class with her. I will also get tutors if needed.

I am going to 3 Galas this year, I am going to New York City for the annual NDSS Gala next week. I am really looking forward to meeting Lauren Potter and I am pretty anxious about that. I am attending the Gala here for Syracuse Gigi’s Playhouse and got a new dress for the occasion. I am really looking forward to going to New Jersey the following week because I get to speak at the Hillsborough New Jersey Gigi’s Playhouse Gala. They just opened this month and seem to have a lot going on. I am really excited.

I have been playing floor hockey this season, we recently went to games in Rochester and came back with a bronze medal. I am happy with that. I was the only goalie but I had fun doing it. We are having States here in my hometown of Syracuse and will keep you posted.

We have our Down Syndrome Valentines dance next month. My parents organize that and I help them with the decorations so that will be fun.

Next week class at Syracuse University young actors should start back up after the semester break, I am really looking forward to it. I can’t wait to see my friends and facilitators again.

I also had to take my 5 hour licensing class again to be able to take another road test. Glad that is done. I have another lesson and they are setting up another test. I think they are into March booking those so that will be a little while. Good, let the snow go away!

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November and December news

*****UPDATE**** The ABLE act has passed the House and the Senate and is now with the President to be signed. So many people have helped to pass it. I can say I started in 2010 when I went to the NDSS Buddy walk on Washington, so proud to be a part of it!!!*****

This last month I had a another speech at the Crouse College of Nursing and spoke about Gigi’s Playhouse and what the playhouse has to offer for the younger children and the program’s we currently have for the individuals that are older. I thought it went very well. They had questions that were pretty good.

Gigi’s Playhouse held their Anniversary party, it was a pretty good crowd that showed up to celebrate. The time has flown by!

I was asked to be a judge in a male contest called Mr. Pink for the second year. It was held at Pensabene’s Casa Grande to benefit Breast Cancer awareness. The judging was based on talent, beach wear, introductions and final questions. The winner from the year before got to crown this year’s Mr. Pink. It was a huge success and a lot of fun!

The beginning of November was of course election time. Last summer I was at a Chief’s game and met John Katko who was running for Congress. He gave me one of his shirts and we took a picture together. A couple of weeks before the election, we ran into him again at our Church Bazaar and he remembered me. We talked and he gave me his business card so I gave him mine. He said, a motivational speaker, you should be speaking for me, we laughed and he said he would talk to us later, I was with my parents. Then the Monday before the election, my mother and I left the house and drove to my Drama class. My Dad got home and there was a message on the machine. It sounded like a regular election call but it wasn’t. He was calling for me, he wanted to make sure that we got out to vote and said after the election he wanted to talk to me to be an advisor for him if he won. How cool is that. He won!! I know he is very busy now getting all set up in Congress so I am waiting to hear from him, it will be sweet.

I haven’t been blogging much because I had to write a paper for my class and take an exam so I really had to concentrate on that. I just finished my course at LeMoyne and I passed my final exam with 70 and now I am waiting for my final grade. I just found out my grade for the paper was a 23 out of 30 which is a 76. I had two awesome tutors that aided me in writing my paper, one was a writing tutor, her name was Hanna. My tutor Kate helped me get my homework done, get it in on time and making sure it looked good before handing it in or submitting it. She also helped with my paper. I couldn’t have done it without them. Nina my mentor was a huge help with my open book tests and extra credit and Jess taking the class with me. I am lucky and thankful for all of them.

This brings me to Thanksgiving, I celebrated Thanksgiving with my family and have been thinking of all of the things that I am thankful for, like my two jobs, at Gigi’s and Paparazzi’s. I am thankful for all of my speeches that I have been doing lately. I’m thankful for my family and friends, one friend that I am thankful is well again! I am thankful that I am a self advocate that can speak up for some of my friends and others that can not speak up. I am thankful to God for everything I have, shelter, clothes for my body, and food on my table because I know that other people don’t have all that.

To start off December, I spoke at Liverpool High School. I spoke about bullying and the use of the R word and how very hurtful it is. My cousin Michael talked to his teacher about me coming in and that was pretty cool.

I also did the polar plunge again this year. I dressed as the Ice Queen of Hearts and plunged in the freezing cold water, we raised about 3200 dollars. I spoke there to a huge crowd about my polar plunge partner and coach Doug Klepper. He is retiring from Coaching. I am very sad that he will no longer coach with Special Olympics. He is definitely family.I will miss him but I was glad he committed to plunging with me again next year! Yea Doug!

I did take that road test again that I told you to check back on, and again I did not pass. This time it was due to parallel parking. Lisa my instructor said I psych myself out so we aren’t going to do a lesson right before the test again. Usually my parallel parking is pretty good. Ok, so the 4th time is a charm, right?

Last Saturday I was with my parents selling papers and collecting outside for the Old Newsboys. We collect for the childrens toy fund. We did pretty well. Afterward we went to Dinosaur bbq for a celebratory lunch.

I decided I will finish December when I do January’s blog because it is just so crazy busy with Christmas coming up, so to all of you, have a very Merry Christmas and a Happy Happy New Year!

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Down Syndrome Awareness month

This month was very busy, let me start out by saying October is Down Syndrome Awareness month.

Let me tell you what it means to me. Families, advocates,and self advocates celebrate the advocacy and the awareness of Down Syndrome. We want everyone to realize our potential, how much we are capable of, that we are valuable, that we do the same things everyone else does, maybe it takes us a little longer, maybe it doesn’t. Some people without Down syndrome never drive, I intend on getting my license, some never go to college, I have 15 hours toward my Associate’s degree. We want people to know that they should never under estimate us. The sky is our limit, Kelly Hampton says something like we just have to push throught the ceiling!

In the beginning of this month Gigi’s Playhouse, where I work, held their 5 K run and walk, it was cool and literately cold with rain. Me and my Mom came out and walked it. It was successful a lot of people attended the event even though it was yucky out. I had a good time, I was a little tired afterwards .

This month I also had a few presentations, I had one at Syracuse University and spoke about not using the R word and how it hurts us even when people are saying it casually and not about someone.
I went to Cato where they had a 5K to benefit Special Olympics and I spoke there to kick it off. They had a shorter fun run that I participated in. I was tired and out of breath after the fact but I did it, maybe next year I will be able to run the Gigi’s 5K. I am trying to lose some weight and that may make it easier. It was exciting, my Mom and I both won a raffle.
I was the keynote speaker at Belhurst Castle for the Fingerlakes Collaborative Self Advocates, I told them my story and hope I helped inspire some of them. Some people from other Self Advocate groups from around the state came to me and told me they really liked my speech and asked me if I would come and present to their groups. Woo hoo!
The other night I presented at the Oswego Phoenix Center to a group of future teachers taking graduate classes, some of them were going to be Art teachers, some Science and Math and some in Special Education. I talked to them about my background in schooling and what has been going on in my life, driving, going to LeMoyne college and taking one course a semester and doing well in it. I was relaxed talking to them and I was feeling happy and content to talk to a group of teachers about what they can accomplish in their future classrooms. Their questions were great. I enjoy speaking to many different audiences and I am always looking forward to the next speech, which is next month.

This month I had a couple of Special Olympics competitions, we had State games in Glens Falls I went for Bocce. We left on Friday the 17th, there were 8 of us athletes in the vans and my parents were the coaches and drivers. The other athletes were all on one bus. Our hotel was far away from the other athletes but that was ok. We got there early and my parents had read they had a pool so we brought our suits and the girls went in the pool and hot tub, that was cool, we never get to do that during Special Olympics. They had a Harvest dance before dinner and opening ceremonies. The Harvest dance was really nice, they had a DJ and great dancers leading us in different dances. It was nice because we didn’t get a dance on Saturday like we sometimes have, they had some games, and then we had opening ceremonies and they were short, that was ok because we had to get up early the next day for competition. Both teams did very well, our team won a gold medal and the other a silver medal, pretty good huh.

Last Saturday I had a bowling competition and bowled pretty well I got over 100 in two of my games and in the third game I bowled just under the 100 mark. I came in 2nd place, I was pretty happy with that. YAY!

That same night when after we came back from Fulton we went to a church event and they had raffles, wine tasting, and casino games to play. My parents and I played blackjack and that was fun. I won some and lost some. But that is how you play the game.

That was all the good news, now here is the bad news, I took my second road test and yet again failed. I missed a stop sign that was a double stop sign. I also hit a curb, both things were at the end of the test. I was that close to passing, ouch. The examiner actually told my instructor that I should come back because I did well, so I do have a third road test in December, early in the month, so wish me luck again and stop back to see how I did. I’m saying the third time is a charm, right!

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Busy September month

I started out a busy September with a couple of Presentations. I had a public speaking engagement early in the month in Oswego to future teachers, a small group but it went well. I have spoke to groups for Professor Dougherty before, it’s really nice that she asks me back. I hope it is helpful to future teachers for their future students that they look at us as having abilities not disabilities.

I also went to the Crouse Nursing program at the Marley building. I presented to future nurses. I talked to them about Down Syndrome and Gigi’s Playhouse and what it means to have the baby and how important it is to give them current information so they don’t tell new parents incorrect facts. I told them it is not a sad diagnosis and I am proof of that! It is nice that they can see how far a sick baby (like I was) can progress, so they can see the whole picture and not make any assumptions. I gave them information on the Playhouse so parents have a place they can make contacts with people going through the same things.

September was a very busy month I had a couple of Special Olympic events going on. September 20th was Bocce competition. Our Bocce club went to the Toccolano Club in Rome New York. Two teams came in second place, my team and another team came in Third place, and one of the teams came in 1st place. We had fun!

A week ago I had a softball competition and played two teams we lost both games but got a 3rd place medal. I had a lot of fun. It is exciting to win, but I was so tired that week, I was so busy.

The day before competition we went to the Turning Stone casino to see Kathleen Madigan, a comic who is very funny. I can’t remember the name of the guy who opened up for her but he was very good also. I like hanging out with my parents and going to cool places like that. It was my first time to a real, comedy club. We had dinner at a place there, The Tin Rooster and we gambled a little afterward, luckily I did come home with some of my money.

The day after competition was the Buddy Walk and I was working with my mom that day and helping her with the raffles and getting my mom set up and running. I was there early, 7:30 am. I helped her out a lot before and at the start of the walk. Gigi’s Playhouse was also there, set up near the raffle tent. I was working a double shift because I worked over there for a little while also. I love the Buddy Walk seeing over 2,000 people there supporting all of us with Down syndrome. It makes me happy, but I was tired, it was a long day.

I have been taking classes at LeMoyne college. I am in a Sociology course and it has been going pretty well, so far a 90 average, cool right. I feel very happy and excited about that and hope I can get an A in the class whoo hoo.

Speaking of Down Syndrome, October is National Down Syndrome Awareness Month, it is to celebrate the awareness and advocacy of Down Syndrome. I hope everyday that I create awareness of the things all of us with Down Syndrome are capable of. I hope someday we won’t have to have an Awareness and Advocacy month, that it will be a given, but for now I will do everything I can to help get to that point.

October is looking to be a busy month as well. I have about 5 Presentations and I will take my second road test, so stop back and see how I did and wish me luck!

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Future teachers

Today I went to a school in Fulton, NY to do a presentation to future teachers. The class was made up of future teachers that will be student teaching next semester at the elementary school we were in. I tell them how I learned best while in school and to never underestimate my and the abilities of those of us that are differently-abled. I took some questions about education, and my accomplishments. I took a picture with them. I like speaking to groups like that and hope that I make a difference to how they teach or treat someone differently abled. It was a small group of about 20 to 25 people.

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Motorcycle Ride

Today, my friend from church Jack Sheean came to my house and took me for a nice long motorcycle ride we were out for a couple of hours. I had an awesome time with the wind whipping in my face sometimes cold and sometimes warm. I went through Jamesville, Weedsport, Skaneateles, and Auburn. He took me out to lunch, we went to Quaker Steak and Lube, it was very good. I love riding with him, it is always fun. This was my second ride of the year and I love every bit. Thanks very much Jack I had a blast!

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Gigi’s Playhouse

As you know I work at Gigi’s Playhouse, as the Assistant Site Coordinator and I used to share an office with Angela, she is the new Site Director of the Playhouse, so welcome Angela. I enjoy working with her and we have been making some changes. One of the new changes we made together, was me getting my own office, I am right next door to her so we have been collaborating and working well together. I love my new space, it is very comfortable and roomy. I now feel more indepedent and I like it a lot.

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Casowasco

This Sunday I am going to camp for a couple of days I will be doing a bunch of activities like going in the water, in a boat, bible reading and hanging out with friends, I will be doing some creative activities as well. I am looking forward to spending time with my friends and making new friends. I leave Sunday by 4 and come back on Wednesday in the afternoon. I am planning on having a good time with camp fires, singing and everything. I look forward to it every year.

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