Legislation

If you have been reading my blog at all you know the ABLE Act passed before Christmas, I made two appointments to meet with Senator John DeFransisco and Senator David Valesky to thank both of them for signing and Senator Valesky for being a co-sponsor of the act.

My appointment with Senator DeFransisco was January 22nd. I had previously been to his office to ask for his help for the ABLE act and see him out occasionally so we know each other so I was able to give him a nice hug to thank him for helping to pass the act. I also told him about the Self Advocate of the Year award that I am being awarded in Washington DC in April. He told me that he wants to recognize me in Albany for my achievements. That is way too sweet! We took a nice picture together. He is a very nice man.

On January 29th I had an appointment to meet with Senator Valesky and also thanked him for helping passing the act as well as co-sponsoring the bill. I told him about my award as well, he said congrats and to keep advocating. We also took a nice picture of the two of us which he put on his facebook page and tweeted about it, he told me to like his page then like the picture. The picture looks great.

I really like being able to go and talk face to face with our Senators and Assembly members because it makes it a lot easier when we need to advocate for something.

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2015 WHAT A BUSY YEAR

2015 was a great year; I just wanted to recap everything that has happened. I have taken many road tests, failed at 4 of them. I passed my fifth one and woo hoo; I am official NYS licensed driver.

Sadly I lost my Grandma in July, I really miss her but I know she is with God now and that is good!

In August I went to an open casting call for a movie called American Dresser. Awhile later I got a phone call from them to be an extra in the movie that they were shooting here in Syracuse. It was a scene where I was walking behind the two stars Keith David and Tom Bergeron. That was super awesome and although it was a paid extra I think my check is finally going to come this week. I hope we get to see my name when the credits roll.

I took a required noncredit writing class at Lemoyne College last semester, I passed that, I am trying to improve on my writing and proofreading and trying to do the same with my blogging with tips that I learned from my class.

I have been selected as the National 2016 Champion of Change Self-Advocate of the year award, and I am super excited. I am going to receive the award in person in Washington DC in April. WOW, what an honor!

The ABLE act went to the Governor Cuomo and he signed it the week just before Christmas. I have been pushing and advocating for this for a long time, so my friends and I can keep more money in our accounts and not live below the poverty level. This was awesome and later in January I have an appointment with Senator DeFrancisco to thank him personally for voting on it, and bringing it to the Governor’s attention. I met with the Senator a couple of times and called him many times to help push it along. I think I will also try and meet with Senator Valesky and thank him for voting for it as well!

I have been blessed to have been invited to speak at many venues throughout this past year. I hope to continue next year so I can keep advocating and telling my story. I feel like when I am speaking to these groups I am not only educating them, I am learning from them as well as they are learning from me.

I have been competing in Special Olympics and doing well, I have medaled in Floor Hockey in Syracuse, Track and Field in Brockport and Bocce in Queensbury. With my parents and friends, I’ve practiced Track, Softball, Soccer, Bowling and Floor Hockey. I’ve been a fan for my friends cheering them on as well.

I was honored when asked to become a Special Olympic Congressional Ambassador, we meet periodically to discuss public speaking and we represent other athletes. We bring them new initiatives, like I MOVE.

I continue to work at Gigi’s Playhouse in Syracuse, I have been there over three years now and love it, love meeting new families and kissing babies. I hope I am a roll model for families of people with Down Syndrome. They continue to grow and add new programs for people with Down syndrome. Currently we are working on making you tubes so stay tuned to watch some of those.

I have been interning at the Congressman Katko’s office since April, I love working there and being with my fellow co-workers and getting an inside view of how the government works. I hope to help when the Congressman starts campaigning here in Syracuse. I hope to be able to let everyone know what a nice guy he is and how much he helps everyone in the 24th District.

You can see what busy year it has been, and I am so looking forward to what 2016 will bring! Happy New Year everyone.

Thank you for following me,
Kayla

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ABLE BILL PASSES

If you have been following me at all you know I have been a self-advocate for passing the ABLE act bill, first Federally and then after it was passed by the President I was advocating for it to get signed by the Governor! It happened, actually he signed the bill last night December 23rd, for the state of New York, I am so thrilled that he passed it and signed on to it. Me and my friends that are Differently Abled can keep our money in our accounts and not worry about losing our benefits. I was so over the moon excited. I am so happy that he did that. I was so excited that I started saying yeah he did it! I am really proud of that huge accomplishment.

I have been taking my college class at Lemoyne College, the writing class that I have been mentioning lately; I was constantly checking my grade via canvass: that is our school website. I didn’t have it. I actually went online to the actual website which is web advisor and the class is pass/fail. I saw that I had an S which stands for Satisfactory. Then I saw that I passed my class. I was super-duper happy. YAY!! The next class I take is reading and at OCC late in January.

I want to wish everyone a very Merry Christmas and Happy New Year. I hope all of you are having a safe holiday with your family and friends. I am very much blessed for our savior to be born on this day as we celebrate the joyous festivities that is to be Christmas.

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What a busy month and it’s not even Christmas yet!

In December I started fund raising for the Special Olympic polar plunge. I started out by bringing buckets to the places I work like Paparazzi Salon and Day Spa, I collected money from my co-workers. Doug and Tammy owners of The Gem, good friends of ours, helped me fund raise by having his customers drop money into the bucket. He also wrote a nice check for a generous donation from them. Mike and Heather owners of Nichols Grocery and also good friends of ours let me sit outside and ask the customers to donate and gave them some candy for a token of appreciation. I have also received online donations. In a grand total I made over $3,000.

I just finished taking a writing class at Lemoyne College, my last day was December 8th. I really enjoyed it because it helped me broaden my writing skills that I didn’t know that I had. He taught us how to record ourselves; it helps for us to listen back so we can revise. He also taught us how different revisions are used and how they work best for us, like color coding, taking words out and replace them using sentence level revision and putting the appropriate words and or phrases in. In class, he gave us two different writing projects one was to write about how we see ourselves as writers. Our second project was to write a letter to the author, we had to read different articles throughout the class and we had to pick one to write to. During some of the classes we had teacher student conferences to talk about and formulate our writing and revision styles, those days I didn’t have class either, but afterwards I found myself working on my writing. For a final project instead of a final exam we were to compose a portfolio of our assignments giving him our revised edition of writing projects 1 and 2 as well as a 600 to 700 word reflection. We had many reflections and responses to compose and send to him via emails. I don’t know my grade and hoping to get it sometime next week or maybe the week after . I will post that later when I do know my grade. We’ll see!

On Thursday and Friday December 10th and 11th, I went to the Special Olympic Congressional meetings held in Queensbury, NY. What a long ride it was 3 hours back and forth. It is what it is. On Thursday we met up with fellow congressional members and started to talk about I MOVE. It is a program which is for healthy athlete fitness, Nicole and I from our region are supposed to get our team members to participate in the movement. It will keep us in shape and work on a goal at the same time. Before we left for our two day conference all of us had to vote to decide what movie we should watch. Later after dinner, we kicked back and watched a soccer movie and a football movie that was fun. Today we talked about increasing our participation within our own central area to work on our goals and to bring back information that we have gathered. Bill and Robin are the facilitators of our congressional team and to keep us engaged they had us play a soccer game by answering questions pertaining to what we were talking about. We moved on from there to public speaking and listened to two amazing young individuals that are differently abled speak, one had a really great video to show. I love hearing other people’s speeches. After that it was wrap up time and headed back out on the road for the 3 hour ride home. I really enjoy the Congressional meetings and being a Congressional representative.

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2016 Champion of Change Self-Advocate of the Year, that’s me!

I got an email on November 16th from Sara Weir the President of the National Down Syndrome Society, saying Congratulations on being named 2016 Champion of Change Self -Advocate of the Year winner.

I am over the moon excited. It has been all over face book. It’s been shared by Gigi’s Playhouse Syracuse, NDSS my Mom, and my Dad, and Gigi’s Playhouse Hillsborough NJ. I have many likes and comments. They have been saying how awesome it is, and congrats, and way to go. My parents even sent me flowers. I am going to Washington DC in April, where they will present my award to me in person at the Buddy Walk on Washington. This is way sweet. I am so pumped. What an honor!!

This week is Thanksgiving. I want to wish all of my friends, family and everyone else a safe and Happy Thanksgiving. I also want to take the time to say that I am thankful for my friends, and family. I am also thankful for my Internship at the Congressman’s office and everybody that I work with at that office, as well as my jobs and co-workers at Gigi’s Playhouse and Paparazzi Salon and Day Spa. I am very grateful for all that I have and what God has given me.

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Colgate Presentation and seeing old friends

I was asked to speak at Colgate by my friend Dan who is involved in Self-Advocacy. He asked me to join him on the campus to talk about my involvement with self-advocates, and how I advocate for myself. I had done my presentation, which ended up being the speech I had given before. I also showed my video which the class really enjoyed. The class I presented to was Colgate students as well as some students from Pathfinder Village in Ostego Academy. Dan wanted me to do my speech first and take questions afterwards I also answered some of their questions, there were not a lot of them. It was a small class. My two friends Josh Howard and Jared Okun were there. I enjoyed speaking to the group. Dan spoke about the movement and the history of Advocacy. We took a group photo with class and two individual photos with my two friends. I hope that the class learned something from my message, and I hope that the students carry my message with them and their friends and family.

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Hear what Congressman Katko had to say about me being on Bridge St.

I got a sweet call from the Congressman after I was on the Bridge Street Live television show, saying how great a job I did and that I was a great addition to the office! Love working for the 24th District and Congressman Katko!!!

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Bowling Competition and Halloween

This morning, I went to work at Paparazzi hair salon for an hour, like always. Then when I came home I hung out for a half an hour so.Today was bowling competition at the Lakeview lanes. Mom ,Dad and I drove out to Fulton it took a half an hour each way. My friends and I played 3 games and many of my friends came in 1st place 2nd place and 3rd place. I placed third with a yellow ribbon and I am proud of it. My first game was 82 then my best game was my second game with a 94 and my final game was a 74. My average overall was a 83. Then my friends and I had lunch. My friends had pizza, since I am gluten free Sean the program director of Special Olympics for Center Region had provided me with a grilled chicken caesar salad that was very good. I had a good time bowling today and I was on lane 3 with my friend Candace. It was a good day. It was a fun and awesome day.

Tonight was Halloween so after we came back from church I gave out candy until about 8:15. I didn’t dress because I went to two costume parties earlier this month. Special Olympics where I dressed as a cowgirl and drama where I dressed as a bat so I just wore a Halloween shirt.

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Bridge Street Live and Presentation at Bath, NY

Monday October 19th I went on Bridge Street Live television show to talk about Down syndrome awareness, because October is Down Syndrome Awareness month. We want to show people what we are capable of. We can do anything we set our minds to, it may take us longer but we are doing it. They also talked about my abilities and accomplishments, like going to college, motivational speaking and where I do my speeches. We talked about getting my driver’s license, being an extra in a movie called The American Dresser and getting paid for it. They asked me about interning at Congressman John Katko’s office in the 24th District and some of the duties that I perform like learning the computer and phone system and other office responsibilities. I had 5 minutes of air time. It was AWESOME! I would add the video but we were having problems showing it the site was screwy!

Later that day I had a 2 hour drive out to Bath New York. I had a presentation there to two hundred 4th and 5th graders. I did my presentation about my accomplishments, talked about bullying and the “R” word. And not giving up on their goals. I also showed them my video. It seemed that everyone really liked it. I took questions from them, they asked me what is Down Syndrome, my relationship status, if I have a dog, my age, about bullying about the sports I play in Special Olympics. I also received a gift card to Panera. That was really nice; I am looking forward to using it. I also spoke to the students that Ms. MacDowell has in her classroom and gave them a summary of what I spoke about. Emily and I drove back to Syracuse, kicked back for a little while, had some dinner and then off to Syracuse Young Actors at Syracuse Stage. It was a pretty long day but I’d say it was a pretty nice day!

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Glens Falls Special Olympic Competition and the Athlete Congress

This past weekend I went to Glens Falls to compete in Special Olympic State Games. I competed in Bocce. We left on Friday, it was a 3 hour drive but it was really pretty because all of the leaves were changing colors. I was the navigator for my Mother’s van, we had three vans, my Dad drove one and John Maestri drove the other, there were 14 athletes competing. When we got into Glens Falls, two of the vans went to the hotel after waiting a long time to get the room keys they were going to get lunch after they got to the hotel. My Mom and I went to a Special Olympic Congress meeting, I was chosen to be an Athlete Congress member and my Mom was asked to be the Congress aide, she will accompany Nicole Clapper (another Congress athlete) and I to the meetings. They talked about the events going on and what we need to discuss at our future meeting in December. We will be bringing information back to other athletes, like the I M.O.V.E. initiative, where we set small goals for healthy lifestyles and try to accomplish those goals the next time we meet. My goal is to lose a couple of pounds and keep it off. They also gave me a cool shirt and gave us New Balance sneakers; they didn’t have my size so they have to order them. When we were done me, mom and Nicole drove back to the hotel and met up with everyone else. I had eaten at the Congress meeting but the other athletes did not so we went to dinner early and then went to the Fall Fest outside of opening ceremonies. They had some pretty cool dancers and singer at Opening Ceremonies that was cool, and then the games were officially opened. When we went back pretty much everyone went to their rooms but a t few of us stayed up and hung out.
The next day we were up early for breakfast, then off to the bocce courts. We all played two games. We won our first game and lost our second came in second place and got a silver medal, I was happy with that. There were three other teams, two got gold and one got a bronze so we all medaled and that was pretty cool! We left after medals because we still had a three hour drive home. It was pretty funny though, my Dad was leading and we had to go through these circles, 4 of them in a row but my Dad took the wrong exit on the first one so all three vans were following each other round and round in these circles, we were laughing our heads off! It was a great trip.
I was happy to get my homework done all done because on Monday, I am going to be on Bridge Street for Down Syndrome Awareness month and right after that I am leaving for a presentation at a school in Bath, NY, busy day!

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