Food glorious food!

It was about 12:30 and I woke up with this amazing bout of hunger. You have to understand, sometimes when I’m sleeping, and wake up I forget that I have a disability so I was literally about ready to get up and get out of bed and then I was like ”o yeah, I cant” and I wasn’t about to call my assistant Jackie at 12:30 in the morning just to say can I have a platter of food right now with a million calories? So, even though I was starving I had to adapt just like everything else in my life. I thought, “What is the next best thing?” I thought I could make a menu for the next week in my head because that is the only thing. I could think of that would get my mind off the immediate hunger and think of something else. Usually it is hard for me to think of a menu for the week, because when ever I do it I'm usually not that hungry. So here’s my menu that I thought of:

Monday: pancakes and sausage with fruit, usually raspberries, blueberries or bananas.

Tuesday: salmon brown rice and broccoli.

Wednesday: chicken parmesan with broccoli, yes I like broccoli. And maybe a piece of sourdough bread if we have it. Now even though I’m not at the apartment the entire week, I thought of meals for the entire week anyway.

Thursday: chili and baked potato, some veggie other than broccoli.

Friday: chicken with rice usually in a bowl for easier access. By the way, I like most of my meals in a bowl.

Saturday: lasagna or spaghetti and meatballs with a piece of either garlic bread or sourdough bread and a veggie.
Sunday: a chopped salad with assorted veggies and either ranch or auntie’s dressing (not my aunts dressing, the brand auntie’s)

Now I’m not going to eat my frogs, but I would like to end this post with the names of my frogs, DRUMROLL PLEASE!!!!

The names of my frogs are, McDreamy and McSteamy. Hannah, you are the winner!!! Thank you thank you thank you!!! Or ribbit ribbit ribbit!!! Hannah, if you could send me your address either on facebook or email I can send you something very frogalicious!! Thanks to everyone else that were participants in the contest. Happy 2010, I hope the year is starting out well for all of you! With much love!

Jessi

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! 

-Jessi

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

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

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

 

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.

http://www.chicagotribune.com/news/chi-obit-pritchard-15-oct15,0,3668892.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

-Jessi

 

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? 

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

-Jessi

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! 

 

http://www.lifemyway.org/