Monday, December 21, 2009

A True Gift

As you know, I have to overcome many obstacles in my life and I am ok with this because I believe it makes me a stronger person.  I have received a lot of wonderful Hanukkah gifts thanks to my family and friends but the ability to have my freedom back is an amazing gift.  I am used to not being able to brush my hair or having to have someone give me a shower and read something to me because it is too small.  These are all things that I have either come to accept or are just a part of me and I know no difference.  However not having my power wheelchair, my source of independence, work in the way it should was beginning to drive me crazy.  Not only that but I knew that once the wheelchair company agreed to take my chair, a degree of my independence would be taken away.  This time not for something fun like a vacation.  That is another thing I have learned to accept because it is too risky to take on an airplane.  Now I am not saying that my wheelchair has never broke because that isn’t true.  I am just saying that because it went out of state I wasn’t sure when I would be getting it back.  I am lucky that during this time I was able to switch back and forth between a manual chair and an old power chair because if I sit in the power one too long my back starts to hurt. Thanks to my mom’s persistence, I was able to get my chair back in one piece and it just so happened I got it on the last night of Hanukkah!  I couldn’t have asked for a better present!  Thank you mom! 

I am free! 


Ps.  Sorry I haven’t decided on names for the frogs yet!  

Tuesday, December 15, 2009

A way to wrap up the year.

A few weeks ago, when I was down in the dumps worried about how I was going to complete my internship hours for this semester and worried about what i was going to do for next year, I turned on the TV and watched an extreme home makeover episode about a boy who went through chemo therapy and is in remission.  When he found out that he had cancer he was told that his blood type was B+ and his motto and foundation were born.  Now he has a foundation entitled "B+" and since that episode it has encouraged me to push on through the end of the semester and I thought if he can do it so can I.  So my message to you as this year comes to a close is we have a lot to look forward to in 2010 and remember to stay positive or in case of Cameron, the boy in the episode, B+. 
Roommate Questions
A lot of you have been asking me "What is your status with your roommate?  Do you want a roommate?" or some people have been telling me "It's smart to get another roommate" and my response to that question is sometimes it gets lonely to not have another roommate around and I'm sure it puts a lot of pressure on my parents at the same time but for right now, with me trying to figure out what I'm going to do next year, completing my classes for this year, making sure that I spend enough time with my family and friends, it doesn't seem like it would fit in my schedule, at least not to have somebody with a disability.  I like to make my own schedule and my own decisions even though sometimes I do miss Norine.  So as you can tell, there is no straight answer to how I feel but right now I am content if my parents are OK with it.  
On the brighter side I am happy to say that thanks to Brian and Justin I am the proud owner of 2 frogs.  Yes I not only live in an apartment now, but I have pets of my very own.  Something I have wanted since I moved in.  However, right now they are nameless and I believe no living thing should go nameless so I am having a contest to see what names I like the best.  The winner will win something very frog-a-licious.  Email me or send me a post with your ideas.  Have fun and the frogs and I say thank you in advance.  Happy holidays and as you can tell I'm having fun already!  Ribbet Ribbet, Love Jess

Tuesday, November 24, 2009

Speaking Out Has A New Meaning


I enjoy my life on a regular basis but sometimes going to places such as the speak up and speak out conference makes me feel reenergized and ready to take on any struggle that comes my way.  From the minute I walked into the conference, I felt at ease despite the fact the night before we had trouble getting our rooms and getting the right accommodations I needed at a different hotel.  All of that disappeared when I came to this conference.  All the people were excited to share what they had to offer and have a good time.  There were vendors there that had equipment to make peoples lives with disabilities that much easier.  Motivational books and people laughing and smiling it was the greatest energy in the world.  I knew right then and there that I had made the right decision to come and represent the IAMC Illinois Association of Microboards and Cooperatives and represent myself.  As a person with a disability I knew that just like camp and my dance workshop, I wouldn’t be judged there or looked at differently.  For example there was a dance at the end of the conference and I was debating weather or not to take my shoes off because my feet were really hurting me due to the fact that I was really excited, and then I thought this is the last place I’m going to be judged, put a smile on my face, took off my shoes, and kept spinning.  People were just excited that I was there to stand up and speak out. 

Throughout the next few days I not only enjoyed myself but I got to learn a lot about advocacy and what I want to do in the future.  It motivated me to continue doing what I am doing in school and helping others while keeping in mind what I have to do to stay strong as a person with challenges.  It reminded me never to give up and thanks to this conference.


I was able to get a real handle on what an amazing legacy Lester Prichard left on not only the disabled community, but also the world.  It was unfortunate that I never got to meet him because I think he would have made a big impact on my life but just hearing about his legacy and what an impact he made on other peoples lives made me stronger and made me proud to be at the conference.  Luckily however I was able to meet and take a picture with his wife Barbara and she told me, “In a way Lester did meet you because he saw you on the Life My Way website.”  Just like Lester, Barbara was and is an amazing person and it was an honor to meet her.  We need more people in the world like Lester and his wife with positive attitudes that say we can do anything we set our minds to and Barbara even said “despite Lester’s death we can’t give up the fight for equality.” To find out more about Lester, go to my previous blog. 

Besides meeting Barbara I was also able to strengthen my friendship with Paula Vanier.  She is another self-advocate who I briefly met before at a meeting for people who have cooperatives in the state.  Getting to spend this quality time with a person who is older than me with a disability made me feel inspired and energized along with everything else I did at the workshop from hearing someone speak who wrote his own book despite having down syndrome hearing someone speak with cerebral palsy who is married and just plain dancing with friends.  I learned that sometimes the smallest things could make you the most empowered.  Remember to speak up and speak out.  Happy Thanksgiving to you all I feel so blessed have you in my life. 


Love Jess


Saturday, October 17, 2009

The power of positive thinking

I know I have already written a post for this month but I thought both of these stories were blog worthy

I was lying in bed with a really bad cough wishing that I was at my parent’s house because for some reason they seem to have better immune systems.  When I thought ok there’s nothing I can do about it.  So how can I think positively?  It was then that I thought about Lester Pritchard a man who was a disability advocate who spent his entire life thinking positively and working to better the lives of people with disabilities.  I only wish I had the opportunity to meet this amazing person.  As a tribute to him here is a little bit of information about who he was.,0,3668892.story

As most of you know besides living on my own, going to school, and getting an education is very important to me.  All throughout my time at Oakton just like Lester, I have had to advocate for my needs as I have said before in this blog.  Since I am graduating in May I knew I had to plan ahead.  Now you might be wondering Jess why now it’s only October?  When you have a disability you have to plan ahead even for my graduation because in order for me to stand up in the ceremony the way I want to, they need to order a special ramp and reconfigure the seating in a different way.  From prior experience with this particular person I was expecting her to be negative and even though I didn’t get everything I wanted I still got about 90% and that was only because of safety. 

I was really impressed at the detailed notes she took of our conversation and how much she seemed to care about my situation.  I was excited and giddy.  I left the woman’s office with a huge smile on my face.  I think I not only made myself happy but taught her a lot as well! 

Lots of love



Thursday, October 1, 2009

Don't Judge a Book by Its Cover

 There are only a few places where I feel completely accepted these are camp, my dance workshops both here and in California and most recently my trip to Israel.  Why am I telling you this?  The other day I was at a party and about to judge someone because they were petting me like a dog and talking to me in classic baby talk.  I almost said something but then I thought I get judged all of the time and is it really worth it?  Then I was sitting at Yom Kippur service a few days later and having a good time, when all of the sudden our older rabbi walked up to the pulpit.  I was thinking o no why am I here.  I wish I was back at my apartment because when he speaks he goes on forever.  But then I thought come on Jess give him a chance.  It’s the New Year!    Everyone knows the saying don't judge a book by its cover. Do you like to be judged?  So I did what my conscious told me and gave him another chance.  As it turned out it was pretty good.  Now I am not saying that I will never judge a person again or by telling you these stories I will never get judged again because I know that unfortunately when you have a disability it comes with the territory.  But I think that becoming conciously aware of when you are about to judge someone can only help you. 

So in honor of Yom Kippur or the Jewish judgment day, just ask yourself would I want to be treated that way and do I want to feel completely accepted where ever I go and what ever I do?  That’s what I want don’t you? 

Tuesday, September 1, 2009

I Did It!!!

Today September 1,2009 is a very special day for me. I have lived at the purple pad and have been writing this blog for exactly one year! A year ago living in an apartment was something my family and I talked about over dinner. In the beginning, even though I wanted to live on my own, I didn’t know if it was possible for me or if I would like it.  I even thought there might be a chance that I would write something like unfortunately the apartment thing didn’t work out for me and I had to move back home but luckily that was not the case.  With the help of my mom, dad, and PA’s, this has been a very successful year.  Thanks to them another one of my dreams has come true.   As I sit here and think about this past year I know that I still have a lot of things to master about living on my own and things will be different now that Norine has moved out.  I am disappointed about this and it will take some getting used to but I understand and I believe there is a reason for everything.  However over the course of this year, I have learned a lot of important life lessons such as what it is like living with a roommate, having to hire and fire aides, and being in charge of someone.  Like everything else in my life freedom comes with challenges and it isn’t always easy, but the fact that I can say that I have lived on my own for one year with supports means a lot to me!  I plan to stay here at least another year and look forward to the new challenges and adventures that lie ahead as I continue to live on my own and write this blog. 

I would also like to welcome Lindsy as the newest member of my support staff.  We went to Israel together and we have a great relationship.  She is helping me this year at my internships on Mondays and Wednesdays and some Friday nights so I can stay at the apartment more often. Not to say that I don’t love coming home to my moms cooking and spending time with my family because in fact I do, but getting the chance to stay at the apartment more will allow me to feel that much more independent and it will open the door to new opportunities for me.  Thank you for reading!  It has been so much fun doing this. 

Yes ladies and gentlemen of the jury, I did it!

I have lived on my own for one year!  !  ! 

I am very happy! 

Lots of love


Ps.  Please see the link below.  We need to get more self advocates with disabilities in the state of Illinois because if we are silent nothing will get done and I along with the disabled community could lose the chance to live independently with self determined lives but at least this website is a step in the right direction.  Thank you for letting me be a part of it.  It is an honor to do so.  Please spread the word!


Friday, August 7, 2009

Sent from my iPhone

Israel Adventures and Norine update.

Monday, June 8, 2009

Today was a very interesting day because it ran into two days due to the fact that the flight was so long. First I flew to New York at JFK Airport, and then to Switzerland after meeting up with the group. It was hard to tell what day it was or even what time it was. This made me both nervous and excited. I really felt for once in my life I was going on an adventure. After the Switzerland trip I knew Israel was just around the corner, I was even more excited! We arrived in Israel at 4:30 pm Israel time, but to my body, it felt like nighttime. At times I felt like I was pulling an all nighter. Once we got there I couldn’t believe the beauty I saw before my eyes. People had always told me Israel was beautiful, but until I saw it, I didn’t believe it. We arrived as a group and a bunch of people welcomed us with a sign and flowers, which made me excited and comfortable to be in this unfamiliar place. I had finally arrived in the place of my dreams!


Wednesday, June 10, 2009

On the first day of exploring this country, we started out by going to Mt. Arbel, a famous mountain in Israel. It looked like a huge Grand Canyon with lots of rocks added to it. I took many pictures to capture the beauty. Then we continued our journey by making our own pitas at K’far Kedem and really feeling like Israelis by riding donkeys and dressing up as old fashion Israelis. We also enjoyed a real Israeli lunch at K’far Kedem before going on a boat ride where we danced to Israeli music and when I experienced a drum circle for my very first time. My question of the day was if Menachem really got the pigeon or if it was just for show. We ended the day with a great meal and a chance to explore Israeli market places and shops before heading back to the hotel. By the way, Israeli money is really cool. My favorite activity of the day was the boat ride.


Thursday, June 11, 2009

On our second day of the journey we saw a beautiful view of which I took many pictures again. It was called the Tel Dan. When we were done enjoying its beauty and going up and seeing what it had to offer, we went back up to the bus to go to my favorite place of the day; an Israeli chocolate factory where we saw how their chocolate was made and got to taste it. Then we got into Jeeps and got to see many different parts of Israel, including the Jordan River. When we were about half way into the jeep tour, we stopped at the Jordan River where we got to enjoy sitting on rocks like biblical people. The counselors made me a thrown out of rocks and made me feel like a queen. Before we went back to the hotel we celebrated Jonathan’s birthday, a fellow participant with cake and watermelon. The river was amazing.


Friday, June 12, 2009

On the 3rd day of our journey, on the beginning of Shabbat, we went to the Kineret which is Israel’s main water source which was actually near our hotel. We went swimming there. After enjoying the Kineret we got ready to have an authentic Shabbat with dinner and dancing right in the center of Jerusalem, not far from the old city. This was a very moving experience especially because we were here for Shabbat. Praying and dancing in that environment made me feel very grateful to be where I was. And something I’ll never forget, it made Shabbat seem very special, more than just a weekly holiday that comes and goes.


Shabbat, Saturday, June 13, 2009

On the 4th day of the journey after Shabbat concluded, we had a Havdalah ceremony outside of our hotel looking out towards Jerusalem. That experience was very powerful and inspiring because after the light was illuminated everyone held hands and very slowly started singing songs and eventually we got much louder. After the ceremony we had an army night coordinated by the IDF soldiers who joined our trip in the 2nd day. With the help of my new friend, the medic Dovi, I did the army crawl through the obstacle course. It was really awesome, that was my favorite part of the day.  PS we also learned about a soldier and what he went through to help other people and that was only one example. There are plenty of soldiers who everyday help the people of Israel stay strong. I was very fortunate to meet and come close with real Israeli soldiers.

Sunday, June 14, 2009

On the 5th day of the journey we went to what’s absolutely one of my favorite places in Israel the Kotel, otherwise known as the Wailing Wall. I felt so fortunate to be able to speak to G-d in this very holy place, an experience I’ll never forget. Just like when I arrived in Jerusalem I didn’t yet realize how big of an impact it would make on me as a person, especially a Jewish person. Like one of the participants and later what one of my friends said, “You feel like your in G-d’s office.” It’s an experience you have to partake for yourself because there are not enough words to express how special and powerful it is. Before heading to the Bedouin Tents for dinner and campfire and sleepover, we toured Jerusalem the rest of the day. The sleepover was a neat experience to see how Bedouins live.


Monday, June 15, 2009

On the 6th day of the trip we went to Masada, which was the hottest day. It was almost unbearable for me, but it was an amazing site to see at the same time. Then we cooled off by going to the Dead Sea. This was my favorite part of the day and one of my favorite parts of the trip as well because I felt free, especially for someone who uses a wheelchair this is very hard to come by. I floated on my own with no help, during this brief and precious time. Because it was so salty, I could pray and meditate as well as be comfortable without a worry in the world.


Tuesday, June 16, 2009

On our 7th day of the journey, we went to do a mitzvah, or a good deed for the rehabilitation center in Israel, similar to Shriners Hospital in downtown Chicago. The experience was kind of boring because we had to shred paper but also important cause I got a free trip to Israel, and it was only right to give back for this trip. After we did the charity work, we got to try out some of the equipment. My favorite part of the day was trying out the scooters. I took a lot of pictures and felt like a kid again. I liked it because it supported me more than a regular scooter, sometimes its good to feel like a little kid in the right environment. Then we went to one of the next important places in Israel, Yad Vashem, Israel’s Holocaust Memorial. If you’ve never been there, I recommend you go because it’s a powerful experience even though it may be emotional. Some of the exhibits are hard to explain, but have helped me understand the Holocaust more than taking a semester course. Finally we briefly walked through an illuminated room saying children’s names and ages that perished in the Holocaust. I felt like their spirits were with me. Even though I didn’t know them, this was very emotional and powerful for me.



Wednesday, June 17, 2009

I’m sad to say that this was essentially our groups last day in Israel but on the upside, I believe it was one of the most powerful and special days of the whole trip, because I was able to plant my roots in the Holy Land of Israel, and dedicate a tree to anyone I want. The person who I dedicated the tree to, my uncle Steve, would get better, due to the fact that I prayed and planted the tree in such a beautiful and holy place. I was proud to leave a piece of me in Israel before concluding our trip. The last tourist attraction was Independence Hall where Israel was born and declared a state. This made me proud to be a Jew and thankful for being able to experience this trip. Before heading in the plane, we had a final banquet and awards, kind of like in camp. Some of the experiences both with people and the places we saw weren’t always easy, but I’m so grateful for this opportunity, and I’m so proud to be Jewish. I hope all the best for all of you as I return from my journey. No matter where I am in the world, you are all important to me.

I would like to take this opportunity to thank all of the wonderful staff that made it possible for me to experience Israel like my peers. 

Also a big Thanks to Lindsy because with out her there is a big chance I wouldn’t have been able to go on a trip like this.  As a result of the trip I believe our friendship has gotten stronger and I am so grateful for the new people I met there. 

Something else that I feel so grateful for was to have the opportunity to have Witness and celebrate Brent and Kristina’s wedding with them.  They are perfect for each other.  Before I end this post, I have some sad news. Unfortunately Norine has decided to move out at the end of August.  Yes I am disappointed but I know not everything is easy when you move out and the bumps in the road, is what makes us stronger.


To end on a happy note you can go to my face book to see my Israel pictures, the wedding pictures, Matt and Andrew’s Graduation, what Total Link has been up to and more summer fun!  Yes I just got a face book and I love it.  Thank you Jamie and Lindsy for helping me with this! 




PS  Good luck Matt and Andrew!  




Saturday, July 4, 2009

My Independence Day


My independence day!  I always look forward to July fourth because it is a day for fun with my family and a lot of good food.  My dad and I usually take a bike ride to down town Northbrook to see the parade with Brian and Junior.  Then we usually come back to Mom and Dads for a BBQ party with friends followed by fireworks.  This year will probably be no different other than Justin will join in the fun as well. 

My first day of independence was when I moved into this apartment on Monday September 1, 2008 and I first created this blog.  Living on my own and going to Israel has shown me and my parents that despite my challenges I can live an independent life. 


According to C.A. Brooks in Paraplegia News, “No matter what our physical or cognitive abilities, just about everyone wants to be independent. In the world of disability, we use the word a lot. We talk about physical independence: being able to dress, do self-care, push a manual wheelchair, and drive a car or van. We talk about social independence: the freedom to hang out with friends, date, find a mate and raise children.”


Independence also includes “growing up” and taking on adult responsibilities. It means being responsible for your own actions, supporting yourself, and being in control of your own life. In fact, it’s the ability to manage yourself and control of your own life the gives you that chance to be successful, to have a purpose, to be happy”

Here are some of my views on independent living.  Please excuse my voice.  I was extremely nervous!

 Have a fun fourth of July and remember that everyone has there own form of independence!


PS I will talk about Israel in my next post

Thursday, June 4, 2009


In this post I will have two major topics.
Some of you might think that I have a lot of freedom now that I am living on my own, yes I do but the most satisfying freedom for me is one in which I can explore the world of dance without the confines of my wheelchair. You might ask how do you do it? Well to be honest we are so in tune with each other’s bodies that if my partner senses that I am unstable he/she will adjust me accordingly and I will support them where needed in return. This kind of freedom is amazing for me. I am one with the world. Today I experienced a different kind of freedom. One in wich I was running for my life. I was studying with my new tutor Elyse, who by the way is a wonderful person and I will talk about her in future posts.
Anyway, I was beginning to get stressed out because it is nearing the end of the semester and I have three papers due on Monday and this is Saturday. When all of the sudden we hear buzzzzzzzz. The fire alarm went off. Luckily the elevator still worked! It is always an adventure at 607. I also lost my freedom today when my chair broke down. Thank goodness for my back up chair. My parents have lost a little of their freedom as well ever since they started taking care of my cousin Justin but just like everything else in life they are looking at the situation with the cup half full even when times are tough and I honor them for that. One of the things I have learned from the PATH Training I just went to and from my friends/sisters Hannah,CC and Emily, is that just like in dance you have to listen with more than your ears to allow someone their freedom of speech and expression. Thank you for teaching me this valuable lesson that I believe has helped me become a better person and listener, thus a better person in many aspects of my life. This poem is an example of what I mean.
Christine Mayer's poem:

If you are going to work with me,
you have to listen to me.
And you can't just listen with your ears,
because it will go to your head too fast.
If you listen slowly,
with your whole body,
some of what I say will enter your heart.

Finally thank you to all of you who helped plan and/or came to Mary Poppins with us. It was a lot of fun and something I will never forget! Here is a song from it that I really liked before that I must say it is almost as good as Wicked!
Go see it if you can!
Anything Can Happen If You Let It
Mary POPPINS] _Anything can happen if you let it _Sometimes things are difficult but you can bet it _Doesn't have to be so __[JANE] _Changes can be made __[MICHAEL] _You can move a mountain if you use a larger spade __[MARY POPPINS] _Anything can happen, it's a marvel __[MICHAEL] _You can be a butterfly __[JANE] _Or just stay larval __[JANE & MICHAEL] _Stretch your mind beyond fantastic _Dreams are made of strong elastic __[MARY POPPINS] _Take some sound advice and don't forget it __[WINIFRED, JANE & MICHAEL] _Anything can happen if you let it __[WINIFRED] _I wonder... __[ALL] _Anything can happen if you let it __[WINIFRED] _You won't know a challenge until you've met it __[MICHAEL] _No one does it for you __[WINIFRED] _No one but yourself _Vacillating violets get left up on the shelf _Anything can happen, just imagine __[MARY POPPINS] _That should be epitaph _I wear the badge in _Honor of this world's free thinkers __[WINIFRED] _Those who see beyond their blinkers __[JANE & MICHAEL] _Jelly isn't jelly __[WINIFRED, JANE & MICHAEL] _'Til you set it _Anything can happen if you let it __[MARY POPPINS] _Anything can happen if you let it _What good is a whistle __[BERT] _Unless you whet it __[MARY POPPINS & BERT] _Broaden your horizons __[BERT] _Open different doors __[MARY POPPINS & BERT] _You may find a you there that you never knew was yours __[BERT & MRS CORRY] _Anything can happen __[MRS CORRY] _Raise the curtain _Things you though impossible __[BERT & MRS CORRY] _Will soon seem certain _Thought at first it may sound clownish _See the world more upside-downish _Turn it on its head then pirouette it __[BERT, MRS CORRY & LAMP-LIGHTERS] _Anything can happen if you let it __[MARY POPPINS] _If you reach for the stars _All you get are the stars _But we've found a whole new spin _If you reach for the heavens _You get the stars thrown in __[ALL] _You get the stars thrown in __If you reach for the stars _All you get are the stars _But we've found a whole new spin _If you reach for the heavens _You get the stars thrown in __Anything can happen if you let it _Life is out there waiting so go and get it _Grab it by the collar, seize it by the scruff _Once you've started living life you just can't get enough __Anything can happen, it's official _You can choose the super or the
Superficial _Sally forth the way we're steering _Obstacles start disappearing _Go and chase your dreams you won't regret it _Anything can happen _(Anything can happen) _Anything can happen __[MARY POPPINS, JANE & MICHAEL] _Anything can happen __[ALL] _If you let it
I hope you let it!

School’s out for the summer!
Yes school is out for the summer and I have a lot of fun things to look forward too. One of my best friends Hannah is coming home from college and I can’t tell you how excited I am! I also can’t wait for my trip to Israel. It is a dream that I have had for a long time and it is finally coming true on June 8th.
For those of you that don’t know my cousin Brent is getting married on July 11th. I am so happy for them and I wish them all the best! Brent, Kristina is so sweet and she already feels like family to me. I also am looking forward to taking lots of bike rides with my Dad, Brian and Justin. I am also looking forward to doing activities with TotalLink2.
I wouldn’t have been able to have another successful semester at Oakton if it wasn’t for these peoples guidance and support
First I would like to thank the librarians at the Des Plains library for helping me and treating me like a regular college student who needed help with research. Next I would like to thank Elyse for stepping in the middle of the semester and doing whatever you could so that I could do my work as independently as possible and be a good student. You are amazing! I do want to thank my note-taker, Ashley, for always being there. Knowing that I can count on her was always a good thing because I have not always been able to count on my note-takers in the past. I think Ashley and I have become really good friends and I hope that I was helpful to you just as you were helpful to me. Towards the end of class, it was hard for me to focus on the information because we had become such good friends and I wanted to talk to you.

Also I would like to thank Jacki for driving me to class on crazy Thursdays and helping me with homework when needed. Brenda thank you for driving me to class on Mondays and Wednesdays. Barb thank you for taking time out of your busy schedule to go with me to Weight Watchers for six weeks. I couldn’t have done it without you. I wasn’t trying to lose weight, it was for a school project on group dynamics. LOL…when my dad found out he totally lost it. Finally I want to thank Brian and Sarah for helping me in this crazy week of finals and Mom even when you had a hard week you never let me down. Mom and Dad thank you for supporting me in my schoolwork.
Goals for next school year!
1.Become a better writer.
2. Work with Dragon Naturally Speaking.
3.Work on a PC
4.Be as independent as I can at my internships.
5. Work a lot at TotalLink2

Have a good summer!

Wednesday, March 25, 2009

What's Important?

As I sit here and reflect on the events of this week I am reminded that life isn’t easy.
However I believe that going through hard times makes us stronger people, No matter the severity of the issue.
When I am able to look past my particularly difficult issues I soon realize that I have got it a lot better than a lot of people. I have a loving family that will always be there for me through the good times and the bad. I know that my friends will always be there for me too and I couldn’t have asked for a better group of friends. Three of which I was lucky enough to see this week.
I am also very fortunate to be able to afford food and water and never have to worry about an empty fridge or not having a warm place to sleep at night like many people all around the world do. I am also grateful that I can have fun whenever I want to. In addition I am thankful that I have a wheelchair that helps me to get around and experience the world, for without an electric wheelchair I would be like a prisoner with in my own body. Lastly I am blessed to have Junior, my dog. Even though I don’t really live with him anymore I still really enjoy the time we do spend together and I think the bond we have will never go away, no matter how far I move. No one is perfect! However I think the fact that I dance and now go to yoga classes weekly, has helped me to re-center myself and figure out what is really important.

So what is really important to YOU?

Belated February Love Blog

For those of you that haven’t seen my debut on ABC 7 news here is the link if you are interested.
Please spread the word! The power of hope. For those of you that do not know I also have a learning disability that is sometimes harder for me to deal with than my physical one because I have felt like no one really understands or could relate to this part of me. I have been lucky enough to have friends with CP but no one with a learning disability. Now that you know, my hope is that you won’t judge me or think of me differently because of it. I am extremely self-conscious because of it. That was until today. When I met Samantha Abeel, she has difficulty in math with her basic skills such as money management, addition, subtraction, multiplying and dividing. She also struggles with spelling and the passage of time while on the other hand her vocabulary and creative writing got her to go extremely far as to write two of her own books. One is entitled Reach for the Moon and the other, My Thirteenth Winter. Like her, I struggle with my math skills, the passage of time and spelling but do well with writing, get good grades and have a good vocabulary. She even has a degree in Social Work. As I listened to her speak at the Board of Jewish Education, I was amazed at how similar we are. After her presentation, we talked and she signed a book for me. She even took a picture with me and gave me her e-mail and said if you have any questions e-mail me. Samantha gave me newfound hope and reminded me that I can do it too! A few days after I met with Samantha it just so happened that I had an appointment with my counselor to talk about places I could transfer to. I was thinking about National Louis University (NLU) and had a whole plan in mind. We talked and talked but he couldn’t find what I was looking for. I knew it existed because I had seen it just days before. My counsler said to me why don’t you call this person at NLU and see if they can help you. So I did and it turned out she was on leave and wouldn’t be back until April. I called back and they put me in touch with someone else but she didn’t answer either. So I decided to look for it again myself and sure enough within a very short time I found it.

Also I am very grateful to the copy shop at Oakton because they were willing to scan my books and bind them back together. When the special services office was not responsive to my accommodations. Both of these stories have shown me the power of persistence and as Dance Detour integrated dance troop says, We take an alternative route. That is what I had to do and very often find myself having to do.

Norine’s birthday and other fun times.
I feel so blessed that me and Norine have reconnected to become roommates. I believe we complement each other in many ways and it is great to have someone there for the lonely times when I miss my family. Now that I have been living with her, I couldn’t have asked for a better roommate. We make each other laugh, stay up and watch my Tivo together, and just plain joke around. It was her birthday this past Saturday, and me and Jacki took her out to Comedy Sportz. We had a good time and lots of laughs. The week before her birthday we also went to Medieval Times.. Before I talk about Mom and Dad I would like to congratulate my friend Chava and her family because she is getting married this month! My blessing for you is everything in this song, so I would like to share it with you!
Rascal Flatts My Wish Lyrics
Songwriters: Steele, Jeffrey; Robson, Steve

I hope the days come easy and the moments pass slow
And each road leads you where you want to go
And if you're faced with the choice and you have to choose
I hope you choose the one that means the most to you

And if one door opens to another door closed
I hope you keep on walkin’? til you find the window
If it's cold outside, show the world the warmth of your smile
But more than anything, more than anything

My wish for you
Is that this life becomes all that you want it to
Your dreams stay big, your worries stay small
You never need to carry more than you can hold

And while you're out there gettin' where you're gettin' to
I hope you know somebody loves you
And wants the same things too
Yeah, this is my wish

I hope you never look back but you never forget
All the ones who love you and the place you left
I hope you always forgive and you never regret
And you help somebody every chance you get

Oh, you'd find God's grace in every mistake
And always give more than you take
But more than anything, yeah more than anything

My wish for you
Is that this life becomes all that you want it to
Your dreams stay big, your worries stay small
You never need to carry more than you can hold

And while you're out there gettin' where you're gettin' to
I hope you know somebody loves you
And wants the same things too
Yeah, this is my wish, yeah yeah

My wish for you
Is that this life becomes all that you want it to
Your dreams stay big, your worries stay small
You never need to carry more than you can hold

And while you're out there gettin' where you're gettin' to
I hope you know somebody loves you
And wants the same things too
Yeah, this is my wish
(My wish for you)

This is my wish
(My wish for you)
I hope you know somebody loves you
(My wish for you)
May all your dreams stay big
(My wish for you)

I definitely believe this is the month for love!

Big news from Israel!
I am going on my Birthright trip. I am so excited and will tell you more about it in future posts! Yahoo!

Authors note as a tribute to my parents twenty-fifth wedding anniversary I would like to share with you the speech I wrote for them back in October at their surprise party. I would also like to thank them for giving me the opportunity to live on my own in this wonderful apartment because it wasn’t in my speech before. Thank you for leveling the playing field for me in this way. For those of you who were at the party you don’t need to read it and thank you for coming. It mean’t a lot to my parents and I know it is something our family will never forget.

Mom and Dad,
You have been faced with many challenges but whatever they are you have both looked at the cup half full and taught me and Brian to do the same even though it is sometimes hard for us. You take what you have and run with it. I think of our family as a tree with you both being the trunk and the rest of our family and friends the beautiful flowers because without you I would be nowhere. You both are my number one advocates. You both want to see me run a self-determined life and help me with this every single day. You both were my first teachers. You both over see that I have fun. You both love me and want me and my community to live as normal of a life as possible. That is why Mom is on the committees she is on. Dad you always want me to have the same opportunities as other people my age. For example, when I was little you always would carry me up on the roller coasters no matter how heavy or big I was becoming because you always wanted me to ride the roller coasters like any other kid. And when we were on vacation without mom, even though you made me look like a clown, you were willing to try to put make up on me because you wanted me to be happy. You both wanted me to have an opportunity to go to camp and though it was a different kind of camp, you wanted to try to level the playing field for me. The most recent experience I can think of is this summer when my dream came true when I went to access dance company’s summer dance workshop. It was like camp in the same respect that I felt like I could be myself there. Despite my disability, I was like a normal person going to an intensive for something I really cared about. It is very apparent in everything that you both do that you both want the best for me and I couldn’t ask for a better trunk or better parents. So this day is for you to say thank you for all you have done for me and the people that care about you. Here’s to another 25 years of love and Commitment now that I can drink. Thanks for all that you do in supporting my life and our family. You are a terrific start to my tree and I couldn’t ask for better. Happy 25th anniversary, love, Jess.

Saturday, January 24, 2009

My Mark on the City of Destiny

My mark on The City of Destiny.
Aide update!
A new chapter is beginning in my life. Jaclyn Ellis is not only doing Tuesdays and Thursdays during the day but she is also taking over the night shift, which is Saturday afternoon and evening, Sunday day and night, Monday Tuesday Wednesday nights and Thursday evening until we are done with school. Thank you Jaclyn for signing on to help.
Brian’s Birthday
My brother Brian turned seventeen over the break and in honor of his birthday I would like to dedicate this blog to him. We went to Comedy Sportz in Chicago which is improv competition club. We all loved it. It was perfect for all ages. I really recommend it. I could tell that Brian was enjoying himself. . For someone who has a hard time expressing or recognizing his feelings he does a great job at telling a joke or cheering people up. I can always count on him when I am having a bad day. I also think he is fantastic at fixing spelling mistakes. Many people call him the family comedian I think that we are like a ying yang because he helps me with the physical stuff and I help him with the social stuff. He said he is proud of me for living on my own with a self-determined life. He said he didn’t know I could do it and I think the fact that I am living in an apartment, gives him hope that his future could bring opportunities for a life of choice like mine with similar supports. I love you Brian!
ABC Channel News!
Yes you read that correctly! I want to thank ABC channel 7 News and the Illinois Council on Development Disabilities for allowing me to share my views on freedom of choice for people with disabilities. I think that the more people see productive people like me living in environments just like anyone else, the more we are looked at like a neighbor and not like someone who belongs in a segregated community. I feel it is important work to speak up for those who might not have a voice to communicate these basis human wishes and needs. I enjoy doing it and I hope my work is heard by many people who care to make a change in our great state. It is something I enjoy doing and consider an honor every time I am asked to speak on behalf of people with disabilities and I plan to continue advocating now and in the future because I believe that it can only do good. The show will be on Sunday February 8th, at 8:00 am. If you miss it… Check out the reporter, Karen Meyer’s website on Channel 7 News for her archived segments.
The City of Destiny
When my friend Rebecca told me that she found out that Des Plaines was The City of Destiny, I almost fell out of my chair from laughing. It was one of those kinds of laughs that I make with my whole body and no sound coming out of my mouth. Then people start to wonder if I am breathing! You get the picture! Which brings me to my final stories for the month. I was on my way to the library, which is right by my apartment, and I got stuck in the snow. I called Jaclyn but for some reason I couldn’t hear her so, I decided to put my flashers on to see if someone would come and help me sure enough they did. I guess my flashers aren’t just for fun after all. After all that the funniest part was when I came upstairs and Jaclyn said to me who was that man you were talking too? I guess she heard our conversation and I didn’t even know it. Then another crazy thing happened to me the other day. I went to get my bangs straightened at the nearby hair salon but before doing so I wanted to dry my wheels off because they were really wet and I thought it would be good to have them nice and dry. Little did I know, my wheels got extremely stuck in the carpet. And after 45 minutes of Brenda, her daughter Kathy and the whole salon working to get my chair out of the carpet, we decided to call the non-emergency police and sure enough I made a huge hole in there carpet. I have definitely made my mark on the city of destiny but not the way I wanted too. LOL! I would like to leave you this month with something that really hit home for me from our newly elected precedent. It reads,

"We must build a world free of unnecessary barriers, stereotypes, and
discrimination.... policies must be developed, attitudes must be
shaped, and buildings and organizations must be designed to ensure
that everyone has a chance to get the education they need and live
independently as full citizens in their communities."

-- Barack Obama, April 11, 2008

Barack Obama and Joe Biden have a comprehensive agenda to empower
individuals with disabilities in order to equalize opportunities for
all Americans.

In addition to reclaiming America's global leadership on this issue
by becoming a signatory to -- and having the Senate ratify -- the UN
Convention on the Rights of Persons with Disabilities, the plan has
four parts, designed to provide lifelong support and resources to
Americans with disabilities. They are as follows:

First, provide Americans with disabilities with the educational
opportunities they need to succeed by funding the Individuals with
Disabilities Education Act, supporting early intervention for
children with disabilities and universal screening, improving college
opportunities for high school graduates with disabilities, and making
college more affordable. Obama and Biden will also authorize a
comprehensive study of students with disabilities and issues relating
to transition to work and higher education.

Second, end discrimination and promote equal opportunity by restoring
the Americans with Disabilities Act, increasing funding for
enforcement, supporting the Genetic Information Nondiscrimination
Act, ensuring affordable, accessible health care for all and
improving mental health care.

Third, increase the employment rate of workers with disabilities by
effectively implementing regulations that require the federal
government and its contractors to employ people with disabilities,
providing private-sector employers with resources to accommodate
employees with disabilities, and encouraging those employers to use
existing tax benefits to hire more workers with disabilities and
supporting small businesses owned by people with disabilities.

And fourth, support independent, community-based living for Americans
with disabilities by enforcing the Community Choice Act, which would
allow Americans with significant disabilities the choice of living in
their community rather than having to live in a nursing home or other
institution, creating a voluntary, budget-neutral national insurance
program to help adults who have or develop functional disabilities to
remain independent and in their communities, and streamline the
Social Security approval process .

President Obama and Vice President Biden are committed to supporting
Americans with Autism Spectrum Disorders ("ASD"), their families, and
their communities. There are a few key elements to their support,
which are as follows:

First, President Obama and Vice President Biden support increased
funding for autism research, treatment, screenings, public awareness,
and support services. There must be research of the treatments for,
and the causes of, ASD.
Second, President Obama and Vice President Biden support improving
life-long services for people with ASD for treatments, interventions
and services for both children and adults with ASD.
Third, President Obama and Vice President Biden support funding the
Combating Autism Act and working with Congress, parents and ASD
experts to determine how to further improve federal and state
programs for ASD.
Fourth, President Obama and Vice President Biden support universal
screening of all infants and re-screening for all two-year-olds, the
age at which some conditions, including ASD, begin to appear. These
screenings will be safe and secure, and available for every American
that wants them. Screening is essential so that disabilities can be
identified early enough for those children and families to get the
supports and services they need
Best wishes for 2009!