Summer and storms...

Wow! It's been a long time since I posted anything. I had kind of a rough Spring and Summer. Have you ever heard of a Dystonic Storm? That's what I have been dealing with for the past few months. It's also called Status Dystonicus. It's sort of a rare complication of Cerebral Palsy. I have dystonia, which just means that I have abnormal muscle tone because of my CP. So, the Dystonic Storm is my muscle tone being way too high and I was moving my arms constantly. It's really annoying and difficult to sleep. It also makes me sweat a lot and my heart rate gets really high. I was also having some pain in my wrists and arms. I even had some really bad muscle spasms. The storm went away, but then kept coming back. I'm really lucky to have awesome doctors, especially Dr. Pavone! She's a physiatrist, which is like a physical rehab specialist. I'm feeling so much better now! The medicine I have to take for the storms makes me really tired, so a lot of the summer I've been either storming or really tired. I'm looking forward to finishing up my summer feeling all better!

I can't believe I am going to be a SENIOR in high school this year! High school has been the best years of my life so far. I will be sad when I leave because I have made so many friends and gotten to know the teachers and staff really well. My dream job is to come back to my high school and work there as a teacher or maybe a counselor. I think college will be awesome, too. I'm not sure where I'm going yet, but I have some ideas. I think I want to either be a teacher or maybe a psychologist. I also really love animals, especially dogs, so I might do something that works with animals. Maybe I could be a dog psychologist that teaches a class! My life has been running by too fast. My mom wants me to go back to Kindergarten!

In between storms, I have had a great summer. I went to visit my cousins in Kansas, I went to Iowa for a weekend to visit friends and family. I have hung out with my friends a few times, but not as much as I want to! Enjoy the rest of summer, I know I plan to!

Later,
Jack

You never know unless you try!

First and foremost, PROJECT DANCE was a HUGE success this year! We had so many people at it and a ton of kids signed up to be buddies to guests with special needs. We had a ton of volunteers, too. Everybody had a great time AND we raised a bunch of money.


I believe that part of the reason why disabled people are in the world today is to inspire others. Someone that works with me at school sent me a video of a friend of hers that now has ALS and uses a wheelchair and a communication device. He said that God has touched his life by helping him inspire others because of his ALS. A lot of people tell me that I inspire them and that makes me feel awesome because I feel that it is my calling. I am so lucky and blessed that I am able to inspire people. My friend's with disabilities inspire me and they always make my day. When I see some of my friends at school, they make me so happy. My mom tells me that I do that for other people.

I am helping out with the volleyball team this spring. What a great group of guys! They are a silly bunch! My message for  people with disabilities is to try new things. I wasn't sure if I should do volleyball and I'm so glad I did. Sometimes, it's easier for those of us with disabilities to not try new things or not get involved, but people are really nice most of the time and they are so happy to have me as a part of the team. This could be the same for anyone with a disability. Give people a chance to meet you and talk to you. You never know unless you try!

Project Dance FIERCE

The club I'm in at school hosts this awesome event every year. It's called Project Dance. This year, we are calling it Project Dance FIERCE. We have a four hour dance party that is open to anyone who wants to come. A lot of people from our school and our community that have special needs come and we all dance and have a blast! Even more people come that don't have special needs and it is so cool. I love dancing and hanging out with my friends. Our goal is to provide a fun time for all different people, to raise awareness about disabilities and to raise money for local organizations that support people with special needs. Here is a link to our website if you want to check it out. 

https://scnteampolaris.shutterfly.com/projectdance/

I want to tell you why I love Project Dance. Like I said, I love having a dance party with my friends. Also, I love to see so many different people having fun. It's also a great way to meet new people. There are a lot of people with special needs that don't get to go out and socialize very often. Sometimes the situations are hard for them and sometimes it's just too hard or they aren't feeling well or anything could keep them from going out. It's so cool to have a safe and fun environment to just be with other people. So, if you're from around this area, join us on February 27 at St. Charles North High School in St. Charles, Illinois. Oh yeah, this year Project Dance is on my birthday! How awesome is that?

Hope to see some of you there!

Later,

Jack