Questions from Westchester Jewish Center:

1. Do you have a favorite athlete?
2. How often do you go swimming?
3. What is your favorite food to eat at Friendly’s?  Do you like their ice cream?

Answers from Joachim:

1. I do not watch sports. My favorite athlete is from my cheerleading gym.  His name is TY.   He is a cool guy. He helps me to do the tumbling, stunts and basket toss.
2. I go swimming every Saturday to the YMCA. Rain or shine!
3. My favorite food from Friendly’s is Belgian waffle and I like to have a side of home fries too. I like their ice cream.  My favorite is vanilla with sprinkles on it. Last time I got a cupcake ice cream from there.  Yummy!

Hello!  Thanks so much for your questions!  I’ll get right to answering them 🙂

How is your MA program going?  Do you get a lot of homework and exams?  How do you watch so much TV and get your school done?

I actually finished my program last May (2013) so I’ve been out of school for a little while.  It lasted two years and was pretty overwhelming at times.  My program didn’t have many exams which I preferred.  There were a lot of papers though.  I like writing, so it worked out okay.  The program was demanding because I had about 5 classes per semester plus an unpaid internship.  This is how come I can watch tv now 🙂  I’m looking for a job, studying for my licensure exam and also working a few hours a week as a social media internship from home.  The social media thing is unpaid.  I hope to find something paid soon… We’ll see!

Are people at school respectful of you when you need to use your chair?

Yes, I think people were pretty respectful while at school.  I used my chair 99% of the time so I’m not sure many knew I could go without it.  It would get tricky sometimes in the dining hall but that’s just because people don’t pay attention sometimes haha.  This is pretty much how it is in general too- people are usually pretty good.  I will share an interesting story though that just happened.  On Sunday I went to a coffee shop and had to go to the restroom.  The tables around me were super crowded, but my mom and I made it over to the bathroom area fine.  When we came back however, we had to say something because this guy didn’t seem to notice that his foot was in my way.  I sat there for a second, and then we said something like oh can you move your foot a little, I need to get through and don’t want to hurt it.  He kinda looked at me like “what?” He was clueless haha.  I’m not sure how he didn’t put it together that his foot was in the aisle, but whatever.  I think people just need to pay attention to their surroundings.

Does your condition affect your facial expressions?

I hadn’t really thought about it, but I think it does a little bit.  Mainly just my smile, because the corners of my mouth go downward a little bit.  But I don’t think it interferes with people understanding how I’m feeling.

Have you ever been bullied at college?

No, I’ve never really had an issue with bullying at college or during middle or high school.  I did have trouble making friends (more so in middle/high school).  In middle school I had an aide that was with me most of the time to help me with my books, coat, lunch etc.  I think because she was with me a lot other kids didn’t make a huge effort to be my friend.  I had a few good friends, which if I’m being honest is better than having a bunch of acquaintances.  It was hard at times because I didn’t get to experience some of the normal teen stuff like going to dances or football games but it’s ok.  Those kinds of things were hard anyway because they were really crowded (dances) or my vision (couldn’t see the football during games so I had trouble following along).  I think that as I’ve gotten older I’m more confident and willing to reach out more to other people.  Sometimes I tend to want others to make the first move or initiate conversations.  But, like I said I think I’ve gotten a little better.  I think social media has helped a lot because I can keep in touch with people over facebook and it’s easier to say hi and learn more about them.  That was a very long answer to your question haha… sorry!

Do you have hobbies?

Yes!  I have recently started knitting with the use of a circular loom.  The loom makes it easier for me to make things because I wrap the yarn around each little post on it.  I’m not sure if any of you have seen them, but they’re available at Jo-Ann Fabrics.  My mom has started crocheting and so that’s how I thought to try the loom.  We even got my best friend Danielle into making scarves and blankets too. 🙂  When I finish my hat I’ll post a picture!

I’m also trying to get more into sports.  This ties into what I talked about before, trying to branch out and make conversations with people.  It’s tough because my vision affects how much I can follow what’s actually happening on the field but I try anyway.  🙂  Hockey, baseball and college football are pretty big around here so I’m trying to watch the games more.

I also like to read.  I like Harry Potter, Twilight, The Hunger Games, some Nicholas Sparks etc.  I just joined a book club (that’s why I was at the coffee shop Sunday) so I’m hoping to branch out a little 🙂  I wasn’t a huge fan of the book that we talked about, so hopefully this next one will be better!  We shall see.

Thanks for all of your questions!  Keep them coming 🙂

Rebecca Parten, LLMSW

Connections for Community Leadership Social Media Intern

Michigan Disability Rights Coalition

www.facebook.com/CCLleadership

My ePortfolio: http://bit.ly/12nF7Ag 

How old is your horse Bailey?

Bailey is 29 years old.  She is getting up there. As soon as she sees me she gets all excited and ready to ride.

J.

Question from Westchester Jewish Center:

You love chocolate and ketchup.  Ever eat them together?

Answer from Grace:

Chocolate yummy!

Ketchup yummy!

Together yummy!

Chocolate chip bagel dipped in ketchup. Yummmmmmy!

Questions from Westchester Jewish Center:

1. Why did you get kicked out of the chorus?
2. How does Chromosome 18 affect you personally?
3. Are you good at art?
4. Is your picture on the site very recent?

Answers from Talia:

1. I got kicked out of the chorus just for the day two years ago because I was chatting and bothering someone in the chorus named Zachary. In the chorus, these days I’m doing very well and I have a 2 octave high voice in the chorus.
2. Chromosome 18 makes me feel happy because I make tons of new friends and meet my old friends with Chromosome 18 as well as their siblings. I like Chromosome 18 a lot!!!!
3. I’m good at art and my favorite artist is Pablo Picasso. I like to draw like Pablo because he makes sad, happy, shapes and geometry.
4. I just took the picture last Spring with Rick very recent.

Questions from Westchester Jewish Center:

1. Are you teased this year in school?
2. Do you know other kids with Chromosome 18?

Answers from Rebecca:

1. I get picked on by these mean boys.
2. I know two other people that do blog and there are more but I don’t them well. Their names are Talia and Becky.

Questions from The Westchester Jewish Center:

1. What is your favorite food?
2. Do you like pizza?  What is your favorite band?
3. What kind of music do you like?
4. What do you do during the summer?
5. Do you go to camp?
6. How do you deal with people staring at you?

Answers from Austin:

1. My favorite food is probably mac ‘n cheese. It’s SO good.
2. I love pizza.
3. My favorite band is probably Ed Sheeran.
4. I love all types of music.
5. What kind of camp? Summer camp? No I do not go to summer camp 🙂
6. It doesn’t bother me when people stare at me. They don’t understand and they do not know so they stare, which is completely okay. I love who I am 🙂

Questions from Westchester Jewish Center:

1. Do people know that you are missing half of your brain without your telling them?
2. Have you ever heard of Nickelback?
3. What movie was (or will be) shot outside of your house?
4. What was your Make a Wish?
5. Does your fear a stress fracture have to do with Sturge Webber Syndrome?

Answers from Byron:

Hey everyone at WJC,

1. No. I keep it very quiet that I have only half a brain. Only my really good friends know anything about my surgeries and that I only have half my brain.
2. I have heard of Nickelback. I don’t have any of their songs but I know of them.
3. They ended up not using our house for the movie. It was named “The Judge” with Robert Downey Jr. and many other well known actors and actresses. It would have been cool though because those actors would have been in my house because they wanted to use the inside and the outside.
4. My Make A Wish was going to Disneyland. At the time I lived in New Jersey and I had never been to California before. Two years after having my Make A Wish I moved to California and went to Disneyland all the time.
5. I don’t have a fear of stress fractures. Sturge-Weber syndrome is something with the blood in my body it doesn’t make me fear anything.

Questions from Westchester Jewish Center:

1. How much ketchup do you go through in a week?
2. How did you think of your Halloween costume?
3. Did you get some good candy?

Answers form Grace:

1. Ketchup goes good with everything, breakfast, lunch and dinner. I don’t like it with ice cream but it is yummy and I can eat it by itself. Mom says she should fill the pool so we would have enough. Silly mommy!
2. I like playing on iPad and like angry birds game and red angry bird best!
3. I got lots of candy but not enough chocolate – I love chocolate!

Questions from Westchester Jewish Center:

1. How did Byron hear about the PEARLS project?
2. Are there limitations in the activities you do?
3. How can you be alive with only half a brain?
4. Do you get bullied by other kids

Answers from Byron:

Hey everyone at WJC

1. I forget exactly how I heard about the Pearls Project. I remember my mom telling me that Rick was starting something called Pearls Project and she wondered if I wanted to be a part of it and I said sure.
2. I do have limitation to activities that I can do. For example, I love playing soccer, and basketball, but I can’t play on my schools team because its too physical what I do instead is help manage teams. I do that because even though I can’t play on the team I am on the team by managing it.
3.  That is a good question how do I live with half a brain. Honestly I have no clue how I am living. Its great though because I don’t see myself as  I’m that kid with half a brain. I have figured out many things that most people do with two hands I’ve figured out how to do it with one hand.
4. When I was younger I was bullied all the time. It was the worst when I was in 4th grade. I had just moved to a new school. I tried very hard to make new friends, but the kids there saw my brace on my leg. They thought it would be fun to draw me closer by yelling my name to come over and hangout with them. They knew at the time I couldn’t run very fast. As I ran as fast as I could they would run away. They called it run from the cripple which at the time they all thought it was a great game to have me run as fast as I could to catch up to them. Because of this I went to the principal where we all sat down and talked about it, but it didn’t get better it got even worse. It got so bad with these kids that the second half of the year I pretended to be sick all the time and I hated going to school because I didn’t want to deal with those kids anymore. At the end of the school year I never went back. Even to this day I have never gone back because I have horrible memories there. Its also kind of hard to go back there now because its on the other side of the country in California.

Question from Westchester Jewish Center:

How did you get into Cheerleading?

Answer from Joachim:

Hi

My cheer coach Denise Olewnik is a pediatric occupational therapist.  She owns an all star cheerleading gym in PA.  Her passion was to create a special needs cheer team.

Six years ago she asked me and few other special needs children who were getting therapy from her whether we would give it a try to join her gym and we did. We formed our team and we are known as Team Fire in the cheer world.

I was reluctant initially since I have a hard time walking and running.  But my personality fitted my cheerleading well. My mom encouraged me to cheer. I love it. I love my coaches. I have amazing people who love me unconditionally.

We became the World Champions in the first and second year of cheering in the competitive series. I brought home trophies. It made me to feel I belong to a team and I can also be a champion and bring home trophies. I get to travel all over USA.

I have several national champion titles, and world champion titles. My team was on local newspapers, cheer magazines, local radio and TV many times.

So I have decided to cheer as long as I can. Cheerleading also gave me the interest to take photos and videos and I want to become a photographer when I grow up.