State games in Brockport, Wayne’s Tailgate Party and meeting new Family members

I spoke at a retirement party for our Pastor at our church on June 4th and gave him one of my Special Olympic gold medals. I received a standing ovation, I will really miss him, he is great and helped me out a lot. It was a very nice get together.
Last weekend me and my mom went to Brockport College to compete in Special Olympics track and field. Friday was opening ceremonies and dinner. Saturday was an early start, breakfast then we headed down to our venue. My Dad came to cheer for me on Saturday.I had 3 events to compete in. First we qualified, I ran 50 meters did the softball throw and the standing long jump. That was done in the sand and that was new to all of us. We had never done that before. Afterwards we went to the Olympic village, I bought a bracelet, St Christopher to help me with my driving and I started Father’s Day shopping. After that was our actual competition. I ran again for a medal this time. I came in third place; right after I did the long jump and I got the second place medal. I was feeling pretty good and at this point tired as well. I did the softball throw as my last event and came in first place. Yay! When just about all of us were done we headed to the dorms for naps and showers. The relay was going on but most of us wanted to go back and sleep.Then we had dinner then the closing ceremonies and victory dance. We got a couple of team pictures in there too. After the dance we were pretty elated, we went back and had snacks at the dorms, a mini party. Then it was off to bed with us, up early to breakfast. We always get almost everything packed before the party the night before so we are ready in the morning. We all went home and I know I took a nap.

An awesome thing happened; here in Syracuse one of the weathermen at one of the television stations has a Wayne’s tailgate party contest. They bring a tailgate party to you for about 25 people. I entered it by writing an essay about Gigi’s Playhouse, I wrote about what we are and what we stand for. Wayne read it and I won. So cool, we had it June 18th and were on TV. It was the first party of the summer; they had raffles, food and a great time. I had a blast it was way sweet. Wayne gave me a lot of kudos for winning it for all of us!

That same night was also Special Olympic event at Applebee’s; it was Applebee’s Law and Order night. I got to help waiters, waitresses and the police, serve, clean and everything. The Police always help us with fundraisers for the Olympics. They get a lot of money donated so that we can go on the trips across the state and get uniforms and such. It was kind if a long day but I had a great time, I was very tired but it was all very much worth it.

Saturday June 20th, I met some of my Dad’s family that I had never met. Unfortunately it was not the best circumstances. I met many of my Dad’s cousins, Pat, Michelle, Anna and more. I found out that my extended family, Pat’s mother, Aunt Carol who lived in Florida had passed away about 6 months ago. Saturday they came from Florida and had a small ceremony at Assumption cemetary with a reception that followed where I got to know my other family members. It was really nice to meet them but I am very sorry for their loss, many prayers for all of them and my Grandma who is pretty sick right now.

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*****New Driver Here*****

I think today was my all time favorite day. I have been trying and trying to get my driver license. I took the road test 4 other times and they kept telling me to come back because I was doing good and I finally did it! I did it, I have my NYS driver license, I am over the moon excited. I couldn’t stop screaming, my Dad videoed it, I think I screamed for a whole minute. My Mom put these two pictures of me on facebook and it got over 1800 views and something like 65 shares, how cool is that.

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School Vacation and more

May 7th was my official last day of school. I got an A in my class. That day all we had to do was present our projects. There were ten students in the class. This guy Jordan went first and he did this art thing on YouTube and handed in his, it was great; the other eight handed in and presented their projects. I was second; I presented my project and did a pretty darn good job of it I thought. My project will be in the showcase in the Hallway and I am super excited. My professor sent me a picture of it. I am very proud of it on top of getting the A in the class I got an A on the project, YAY! I completed another course at OCC! This will give me22 credits toward my degree. I am so done with school for the summer.
I have been interning at Congressman’s office for a little bit now and I love working at the office I get to do many things like make copies. I got my new office and am waiting for the computer to be up and running. It has to go through Washington DC first. I have been learning how to answer the phone lines, and the computer system. I am doing work for some other staff members there also.

I have upcoming speeches in June, one at the Auburn Holiday Inn, I am the Keynote speaker for the Arise Conference. I am speaking at Father Gehl‘s retirement party. I am sad that he going to retire but I hope he has a good retirement and we will all miss him.

I went to Denver Colorado on May 13th. For an audition to be in a fashion show for the Global Down Syndrome Foundation. We left Syracuse late on the 12th and got to our hotel in Denver at 1 am on the 13th, so we slept in a bit that morning and had kind of a kick back day, My Mom and I went shopping for a little bit. We went to the mall and I helped my mom pick out summer tops for our Florida trip that was the night after we got back.. I know busy right. After clothes, and jewelry shopping, we went to Grilling Wings and Things for lunch; it was so good and delicious. We drove over and checked out the venue that we were going to that night. We headed back to the hotel to take naps, got ready an hour and a half later or so for the audition. When we got there I checked in and joined the already long line to take pictures I held a sign which had my name on it. Then like Special Olympics it was a wait, but I got to sit down with my mom, I was in the B section the A section went before me. I got to watch what I was supposed to do. I got called up in line and headed backstage where we lined up by number. They called us up one at a time and I got to strut my stuff, while my picture was on the screen behind me, I did my walk and twirled like the judges wanted all of us to do. I went out stage left came out for a second to snap and point to the audience. My mom captured it in a video on her phone. I find out later in June if I have been selected, fingers crossed. After that we left, it was supposed to be a three hour audition but didn’t last that long. My mom and I left to grab a little dinner after changing at the hotel; we had to make it an early night because we had a mega early flight out.
We had a lot of time to get to the airport, but security was very long and we just got to the gate as they were calling our names, we were flying stand by and we just made the flight and got the entire row to ourselves again, then a connection in Charlotte and we got home by three, did some laundry and packed for the flight on Friday for vacation.

Friday after work we were on the road again, my parents and I went to Florida for a sunny family vacation, to the beach, the pool, jump some waves with my dad, see my Aunt Nancy and hang out. Friday was our travel night, I do have a good luck charm, it’s a pig pin and it seemed to work for our flights. We drove to the hotel; we had a condo in Siesta Key for a week but couldn’t get in until Saturday so we stayed in a hotel in Sarasota Friday night. It was an hour drive to the hotel in Sarasota not to bad uh?
I met a super nice and sweet flight attendant, her name is Kimberly and she had an Aunt (like a sister) who had Down Syndrome and died in her seventies a year or so ago, I was the very first person on the flight that she gave a snack and a drink and loaded me up with gluten free stuff. I really liked her and she is a super sweet girl. I made a new friend and she is awesome. I really like talking to her and get this I took a picture taken with her. I gave her my business card and she said she will check out my website. I hope that she really likes it.
On Saturday, after getting out of the hotel we made the trip to the condo where we unpacked everything walked around and to see what was what. We bought some groceries and by then the condo was ready to move into. We all unpacked the groceries. We walked down to the beach where a big volleyball tournament was being played. Then we went out to dinner, We went to the Lobster Pot, I had a very good dinner a salmon dish with cream sauce. It was so good.
Sunday we got to sleep in for a while, the day was perfect for the beach and the pool. We stayed at the beach for a couple of hours, came back upstairs just for a few minutes then headed down to the pool, the water was so refreshing. I went in the salt water with my dad at first then my mom, then family in the water, it was so relaxing. I hoped for a nice tan not the stinking sunburn. I had to go in the shade to prevent that from happening even at the pool. Read for a good awhile each day my book and magazine. After the pool, we all came back to the room took naps, showered and had a light lunch.
Every Sunday to ring in the upcoming week they play the drums on the beach and watch the beautiful sunset, so me, mom, and dad went down , they make a big circle in front of the drummers and let the dancers like me dance in the middle. The three of us were kind of in the circle but I was the only one dancing so the guy who was kind of in charge told my parents to move out of the circle if they were not dancing. So I danced with him and we got to move closer to the drums and dance, one of the drummers came towards me and he was like go girl, dance! It started to sprinkle and then came down a lot harder so we quickly left and went for a nice Mexican dinner. That was very good; we did a little condo shopping and went to TCBY to get a yogurt parfait that was so good. We just went back to the condo and kicked back..

Each day was pretty much a repeat, the beach, the pool and just lounge about. A nice relaxing vacation.
We went to a baseball game one night and it was relaxing to be outside and watch some baseball. We got a bit to eat at a burger place called Smacks afterward, and it was pretty good they had gluten free. I got a sunburn and it hurt but I put aloe on my skin and it felt great but really had to start being more careful the rest of the week.

My mom went shopped and I got 2 new bathing suits. We went to Anna Marie Island one night; it was about a 1 hour ride. We ended up going to the Sandbar for dinner, it was really nice to sit outside, we had a very good dinner, enjoyed the sun and the sunset was really nice.
Another night we took a drive to Venice and Naples, not that far from here I think about an hour or so again. We went to dinner last night and it was pretty good. We all went on a wonderful sunset cruise it was an hour and a half and it was breathtaking, we sat on the top deck and the view was awesome. We saw incredible homes, and wonderful views. They did a drawing for another cruise but we didn’t win it oh well. After that we just came back to the hotel and relaxed.

We also went to Sarasota , played mini golf, sat down to have a few drinks, iced tea, beer and stuff. After we played mini golf we went out to dinner and hung out for a while, walked around St Armand’s Circle window shopping. I got some Ben and Jerry’s ice cream and when we sat down to eat it we met another family just walking around and talked to them. I talked to this girl Shannon and she has Down syndrome too. I thought this was really cool. Later we all went down to the pool for a quick swim and it felt really good.
On Friday, I promised my Dad I would take him to breakfast for eggs because he makes me eggs for breakfast every Friday. We went to Another Broken egg and it was very good, so much food. I had an omelet with tomatoes and gluten free pancakes. WOW it is awesome being gluten free and able to get food like that out in restaurants. We walked around after that and because of my sunburn my mom bought me a lightweight shirt to go in the water with. It is super comfortable and fits great. So we did our ritual went to the beach and the pool but get this we all went in the Ocean and something was slapping me on my leg, not my mom or not my dad (he was too far away). Found out it was a fish that kept slapping my legs the front and the back and then slapped mom in the legs too, she said that it felt creepy to her. I felt the same way but I thought it was also kind of cool in a different way. That night was a lazy kind of night. After watching Jeopardy we went out to Harry’s Sports bar and grill and had a yummy gluten free pizza. Mom and dad got sandwiches. It was a good night. A storm came and went fast like all the rain does in Florida.
The last day at the condo was an early start. We woke up about 8 in the morning finished our last minute packing, we had packed almost everything the night before. Then it was throw everything in a bag and go. We had food to go on the road with us. We got tuna wraps and stuff and I had leftover pizza. We left for Fort Pierce where we stayed in a hotel and got to see my Aunt Nancy. I was so looking forward to seeing her. We checked in at the hotel a little early so that was good. Mom was disappointed in the hotel, there was hardly any beach to sit on so when my Aunt got there we hung out for a couple of hours and drove to another beach stayed there for a while. I guess we have gotten spoiled at Siesta Key because we didn’t even go in the water because we didn’t like it, the water was rough and the sand was different. We went back and freshened up, went to my Aunt’s house for a little bit so she could freshen up then went out to dinner at Outback. We had a very nice dinner of steak and lobster and we got caught up on each other’s lives over dinner and desert, it was still vacation after all. We brought Aunt Nancy home drove back to the hotel and went to sleep because we knew that Sunday was going to be a pretty long day.
Sunday we got breakfast right at the hotel it was complimentary and it was pretty good and then we were back on the road again. We found a catholic church to attend in Vero Beach and the mass was really good and a good sermon. After Mass we went to the airport in Melbourne, and got through security very quickly and back home after a connection in Charlotte.

It was a great trip and now back to work, interning and another road test coming up, I’ll keep you posted. Lots of prayers, please!

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Exciting news

**** Newest great thing that has happened to me….Last Friday April 24th, was one awesome day and I am incredibly happy and excited. When we went to Washington a couple of weeks ago, the Congressman asked me to work for him, do some speeches and special projects and to reach out to Erin O’Connor, who would be my boss and sell myself to her. He called her and introduced me over the phone so last Friday I went to the Congressman’s Syracuse office, and what an office it is, just so beautiful, the view was awesome to see. I gave her my resume and she did an impromptu interview. She said that I got the internship position (unpaid), but YAY! Erin gave me a tour of the office and introduced me to all of her and my new coworkers. I start my internship on Tuesday the 28th and I will be interning two days a week, Tuesdays and Thursdays 9-11:30. I am so excited and very overjoyed, definitely over the moon excited. I will wait to put this out until after I can include a day or two of my internship, WOW!!!
Well here it is. I started interning on Tuesday April 28th at Congressman Katko’s office and so far I have been shadowing Theresa while she answers the phone, so that I know how to answer them. In the beginning I have been sitting with her and learning the ropes of what I have to do. I have my new email set up at house.gov. On my first day I learned I am getting an office of my own and got to choose it, they said it is in the middle of everything, cool! I filled out some paperwork, moved some papers around to make a new folder. I met other people I hadn’t met yet. The Congressman came in and we talked for a minute and then back to work for both of us. There was art in the conference room that was part of a contest and one of them will hang in the hallway at the Capitol, the judges came in to determine 1st, 2nd and 3rd place. On Thursday I was counting out survey cards that were returned and came up with 860. There is also a lot more to count, I think over a thousand of them. Next week I am going back to shadowing Theresa in the front on the phones and computer. I am waiting for the computer, someone said they will fix it so I can work on it. I really am over the moon excited and so looking forward to the weeks to come. I LOVE THIS INTERNSHIP!!

On March 17th I three Syracuse University Students came to my house to do a documentary about me for their class. They interviewed me and my Mom, they also came to one of my Track and Field practices and videoed me, my family and friends. Later in the month they showed their presentation at school and asked me to come to the viewing. I went into their classroom and I got to see the documentary that Corinna, Katie and Derek made. They did an awesome job. I hope they got a good grade.

On April 1st I had an early start. I was asked to Westhill High School to do a presentation to 10th graders on bullying. It was their last day of a no bullying week at their school. I was very happy and excited they reached out to me. I spoke about my accomplishments but also told them of how I was bullied and how it made me feel, NOT SO GOOD! I showed my video, the Principal and Vice Principal came in to hear me also. They gave me a nice bag of goodies, I got a themed Westhill mug, water bottle, shirt and gift card to Dunkin Donuts (right up my alley)! I love speaking at the schools and delivering my message. If I can help one person to reach out to get help if they are being bullied than I made a difference.

On April 8th, I spoke at Pensabene’s Casa Grande. I talked to Niagara Mohawk retirees at their meeting. They were generous in giving Gigi’s Playhouse a check so I went and spoke to them about Gigi’s and how they helped. I did the pledge of allegiance with them and they talked about a couple of things and then John the President introduced me. I told them of what Gigi’s offers and a little bit about my school experience. At the end I took questions and they were good ones. I felt happy to share my story about the Playhouse. Some of the retirees said it was a great speech and gave me a high five another said he remembered seeing me peak at Solvay High school and that that was a good speech and this was another good one. I took a picture with the head chef who was making the lunch for the luncheon; she also had me take a picture with the food?.

On Good Friday, the day that Jesus dies for us, my parents and I went to Stations of the Cross at Christ the King Retreat House, it was led by Bishop Robert Cunningham and he led us in prayer through the 14 stations with readers and in candlelight. It was a very nice service. At the end they were serving pizza and I asked the Bishop to join us at our table. I talked to him about Gigi’s Playhouse and being involved in my church as a Eucharistic Minister. We talked about other subjects as well. I thought how cool is this, talking to the Bishop. I felt very honored to talk to him.
Easter is the time to reflect on Jesus coming back from the dead and celebrating his life. On Easter Sunday, we celebrated with family. My parents and I went to my Aunt Melanie’s house to celebrate Easter, we had a lot of good food to eat for dinner, like ham, potatoes, vegetables, pierogi’s, kielbasa. Before all of that I looked in my basket that my parents always hide for me. I got a whole lot of goodies. I gave my parents theirs. We had our Easter best clothes on and went to church for mass that morning. After making our side dishes and part of the main course we went to my Aunt’s house. We all hung out and talked and enjoyed everyone’s company. After leaving my Aunt’s we went to Grandma’s house and gave her some food, she didn’t make it over, I missed her and really wished that she was there, but I completely understand. We left my grandmother’s and then went to the cemetary, we took our corsages from Dad and we laid them down at my other Grandmothers and Grandfather’s grave and prayed. Then it was a whole lot of nothing as we digested our food in the comfort of our house!

On April 14th we had an early start to our day, my Mom and I had to get up at 3 am for a 5 am flight to Washington DC. We were lucky we were able to check into our room by 7 am, before everything started happening, which was nice. We were in at the Buddy Walk on Washington for the National Down Syndrome Society. The self-advocates had a luncheon to attend alone, it was nice because my Mom had been sick and she got to kick back for a bit in our room. I went to the luncheon speak out session; I had a leadership role, I spoke about school, where I was from, what education means to me, I also I talked about Down syndrome in the social media and in the community. After the speak out session I met my Mom and got to watch Governor McAuliffe of Virginia sign a bill passing the ABLE act in his state. He is originally from Syracuse and he went to school with my Dad so I had my picture taken with him. We also went to a two hour training to go over what was happening the next day. That night there was a very nice dinner with an open bar where we got to mingle with other self-advocates and enjoy a nice dinner. They announced the winner of the Ethan Saylor scholarship, I applied for it and was hoping it was me but I understood because the family picked someone who reminded them of Ethan and I understood that completely. I was relaxed and comfortable throughout the night, though my shoes, not so much! We did meet some really nice people from New York City at our table, a Mom and her two daughters, the Mom works for ARC and may be contacting me to speak there in NYC, cool!!
The morning of the 15th was supposed to be an early start but my Mom still wasn’t feeling great so I went down stairs and told the group we would meet them there as soon as we could. We missed the breakfast and got to the Capital steps just as they were disbanding from the picture but they took a pic of Mom, me and Sara Weir on the steps. Our first meeting was with Senator Gillibrand, we met with her staff and took a picture together, we told her about what we were asking for and thanked her for supporting the ABLE act. I told them my personal story about education and what I have been up to at college, the ESEA act that we are trying to pass. I spoke with Senator Schumer and his staff. I remembered him from when he came to Syracuse to help push the ABLE act and showed him the picture of, he said we should take one here in Washington as well; all of the pictures have been posted on facebook. We had a break and we had an escort that led us to their subway car that lead us over to the House side of the Capital. It was a pretty quick ride and a long walk going to where we needed to go. Me and Mom had a break and went to the cafeteria to hang out and I grabbed a quick lunch, my Mom still wasn’t eating. Now my next meeting was awesome, I got to see my friend Congressman John Katko. We were waiting for him in his office talking to Jordan, his scheduler and checking out his cool new digs and he walked in and said Kayla come here give me a hug. I was honored to give him and award from the NDSS, Champion of Change award for helping people with Down syndrome. He looked around for a place to put it and we took a picture with him and I and the award and then a picture with Mom, him and I and the award, it was awesome! I said time to get serious and discuss why I was there. I asked him to sign on to the Down syndrome caucus and he said he would, yea! I also asked him to help us get the ABLE act passed in New York State. I was really happy, he also posted pictures on facebook, it was so cool to see especially in Washington. He told us his wife Robin was also there having lunch with the First Lady – pretty sweet. After the meeting we rushed back to the hotel to get our luggage to try and make the 4:30 flight with a connection in Boston to Syracuse. We got there in time but the flight filled so we tried for the 5:30 to Boston and finally made it on the 6:30 but no connection to Syracuse so we had to fly to Rochester and my Dad drove and picked us up. We didn’t get home until 12:30 am and we had to sleep fast because we had our regular schedules the next day. We were lucky though because that was the day the guy landed the gyrocopter at the Capitol and we had just left there or we would have been on lockdown, yikes, scary!
I recently had a meeting with my Aunt Michele and Pastor Karen from Word of Life church where my Aunt works. It was about a speaking engagement on Sunday April 19th. I went there and spoke to two services for the children; one kind of early in the morning and the other was late morning. I was in the room called The Sanctuary. They started out with songs of praise, and then Pastor Karen talked about offerings, we watched a short video of someone getting baptized. She is super energetic and introduced me as the special guest and I tried to keep the excitement going while I did my speech and showed my video. I opened up the floor to question and answers and they were some very smart kids and asked awesome questions. At the end of the 1st service some of the children came up to talk to me. I had a break for a bit and then the second service; it was the same speech so it was pretty much the same as before. This time after I opened it up for questions they had amazing questions that I never thought they would ask. I was really blown away by them.. At the end of this service , they lined up just to talk to me and I was really excited and it was super energetic for the first service, by the second service I was getting a little tired so I had to make sure that I was on my A game. I think I did ok with that. When it was over I was bone tired and not doing much else. My parents said just watching you was a little tiring and if they were up on stage, they would have been tongue tied with some of the questions. At the end of both services one of the kids came up on the stage and everyone extended their hands to me and I got prayed over. I thought that was really cool, and felt extremely blessed!

On April 21st I went back to Word of Life School. This morning Pastor Karen did things a little different. She did a blessing to our flag, the Christian flag and on the Holy Bible. She introduced me and I spoke just like I did on Sunday. I showed my video and again they asked great questions and it was fun to answer them. I got introduced to the other Pastors that worked there. At the end some of the kids lined themselves up and complimented me and just talked. One of them came up and did a blessing but got stuck in the middle, so I went to him and said you can do it, I know you can and I put my arm around his shoulders. He did very well. Pastor Karen gave me a stuffed Frog and a very nice thank you note. They tried to give me their offerings from the weekend kid’s service but I told her I wanted to donate them back to their collection for the Golisano Children’s Hospital collection. I felt good about that!

I have been plugging along in school in my Math class this month. Ernie and I worked on my final project and I had another test, just found out that I got 101 on it again so I still have a 101 average – yea!
I’m having a great week, great meeting with the Congressman and awesome grade in class and I weighed in at weight watchers and lost weight again, woo hoo. I have been really trying hard, eating better and working out like crazy and it is starting to pay off. I LOVE MY LIFE! Oh yeah another driving test coming up the beginning of June, they said I had it last time – the last part the double stop sign got me again, they said I had passed and that was the last part, DRAT! Next time!

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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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