Tuesday, July 24, 2012

Four Years Already....

 I can’t believe what I’m about to write is my last post for Jessi’s Purple Pad 607. Don’t freak out. I am still going to continue writing. This blog has helped me cope with a lot of circumstances in my life over the past 4 years and I feel like it is a part of me now. For me just to stop would be ridiculous. However, I am ending my first portion of living on my own because next month which will be August, I will be moving into a different unit, which will be purple as well, in the same building. Instead of changing my whole blog title, for this new apartment, I am just going to add 504 to the end of my blog title. So, not much of a change but a change all the same. 
    In preparation for this post, I have decided to summarize all my posts up until this point because I am so grateful for everything, yes EVERYTHING, that has happened up until this point. It has made me become a more confident and stronger young woman. I have so many memories in this house. It really has become a home.
    I have cherished every single thing and would not want to change anything because I believe there is a reason for everything...even the bad stuff. I knew I had a lot of wonderful things happen to me these past 4 years, but until I sat down and really made a list, I didn’t really realize the magnitude of how many there were. So, here’s my list:
    Receiving my first piece of mail- I remember it like it was yesterday. I still love receiving mail, but once I realize that bills come along with my mail, I sometimes dread going to the mailbox. And my mom says, “Have you checked your mail today?”
    Having Norine as a roommate- I will always cherish the memories both me and Norine had during my first year of living on my own. I think it really helped me feel not so lonely, especially since that was my first year my family wasn’t around me every single day. It really helped the transition from childhood to adulthood be more smooth.
    Bought my first pack of beer- How adult-like. I am an adult.
    House warming party- I felt so loved the day of my house warming party. Everyone was there just for me and I couldn’t have asked for a better party...maybe just for some more room because there were so many people that showed up to show their excitement for me as I began this new phase of my life.
    Lots and lots of assistants- Over almost 4 years, I have had lots and lots of assistants like most of you know. And towards the end of my blog, like 2010-2011 and currently, I chose not to say their names so I could have some privacy and they could have their privacy especially because this was going to be public. I thought it would be more appropriate. However, I am not going to change the other posts because that’s how I wrote back then and it would be weird to go back and change them now. I am so grateful for all the people who have come into my life because they have all helped me become more independent in their own way. I have learned a lot from them over the years, even if it means indirectly showing me how I should treat an assistant.
    In the news- Over the years, I have been very fortunate to be in the news 3 times, one for independent living, one for promoting physically integrative dance or PID, and the last one for becoming a public speaker despite having challenges.
    Funny stories- There are a NUMBER of funny stories woven throughout my blog. But one that somehow got deleted is this: 
About a year ago, me and my mom were waiting for some adjustments to get done on my chair and they had to take my chair away. I’m not kidding you...I was in a wheely chair for a good two hours. And because it was later in the day, we were both getting hungry. So, once again, we had to adapt. She said, “What if I wheel you to the cafeteria?” I said, “That sounds like fun and a good blog story, so why not?” This kid who was about 5 yrs old looked at me and my mom in the elevator like we were both crazy. Keep in mind, my balance isn’t great and I’m using all my muscles that I have to stay up straight and not fall out of the chair. I had no seat belt on. So, this must have been a sight for a little kid, I don’t blame him for being like, “What is she doing?” But we successfully made it down to the cafeteria and both my stomach and my mind thanked my mom.  And believe me...there will be plenty of more funny stories to come at 504.
    Parties- There were plenty of parties at 607 and plenty more to come at 504. I will cherish all the fun times I have had here.
    Conferences- Having the opportunity to go to conferences through my work has allowed me to experience the world like I never have before. And has taught me a lot about how the state of Illinois needs A LOT of work when it comes to bettering the lives of people with developmental disabilities. I never realized this before, and when I first realized this, I was like, “Oh my goodness! This is our state?!” At these conferences, it hit me that I was really growing up.
    Going to Israel- My birth right experience was amazing. And though I wish it was longer, I will always cherish the memories that I was able to experience there. Something that I had always wanted to do finally came true. I didn’t even know if this was possible for me. I do want to go back, but if I don’t get the chance, at least I know I have been on Israeli soil in my lifetime.
    “McDreamy” and “McSteamy”- My first pets at the Purple Pad. And Yes, they are still alive and thriving. And they are still doing their favorite thing...fighting. I never really can tell them otherwise. They are not good listeners.
    “All About Adapting”- Throughout this entire blog, and my life for that matter, I have learned that in order to do a lot of things in my life, I have to adapt to a lot of situations otherwise I wouldn’t get things done or just be upset with the outcome.
    Supportive readers- This is where I get to thank you. You have always been there for me. And there are occasional times when someone has said, “I like your blog,” and I don’t even know who they are. And those are the kinds of impacts that are so rewarding to me. That is another reason why I decided not to stop writing my blog but to continue. Thank you, thank you, thank you from the bottom of my heart.
    Pez collection added to Purple Pad- I am so happy that I was able to add my Pez collection to the Purple Pad, and it really added color and excitement to the place. But I really have no idea how I’m going to get all of my Pez into 504. Good luck, movers!
    Graduating from Oakton Community College- It was fun writing to you about my adventures at Oakton. My friend, Hannah, just graduated, and she reminded me of something that I will always cherish. At most graduations, before you go into the ceremony room, all the teachers from the school are there to congratulate you. You feel like you have just won a million dollars, and so many memories start to flash in your mind as you realize this is the end. I will never forget this special day, and I am so glad I was reminded of that portion of graduation because I definitely don’t want to forget that, especially after 5 fun long years and hard work.
    Life lessons- Throughout my blog and throughout my future blog, there will always be life lessons that I will come across, but I believe that the ones that I have already come across are the most influential because they happened when I first started living on my own. 
    It’s all about the journey, not the destination- I have decided to re-say that quote because it is always something I have to remember and it definitely gets me throughout the hard times. It has become like the Jessica Martin motto.
    Lost friends- I am sad that I lost 3 friends throughout almost 4 years. Two of them I lost in their physical form and one of them I lost for reasons I do not know. I am very sad about this particular friend. I know things happen for a reason, but I don’t know the reason. But, like they say, “the show must go on.” And the ones I have lost due to death have made me become a stronger person and I will always remember the things they taught me.
    Choreographed first dance- Thanks to MOMENTA, I was able to cross something off my bucket list by creating my first dance for their show and the disability pride parade last summer. My piece was called Flying Friends and it was a big success. Thanks to my first dance, I have been inspired to continue my career as a choreographer. Without this first opportunity, I don’t know that I would be wanting to choreograph. I love being a choreographer. In the beginning, it was just another idea, but in the end, it has opened my eyes to another facet of dance that I absolutely love.
    Raise money for wheelchair- I will always remember and be grateful to all the people that helped me raise money for my wheelchair. Like I said in my post, you are all my little angels. And KOKO helped my angels do what they wanted to do. Thank you KOKO, and all my other angels, for all you did for me.
    Spoke to medical students/inspired to do more often- Thanks to my experience speaking to medical students and having bad experiences with doctors and how they treated me and other people with disabilities, I have been that much more motivated to continue my work in speaking to future medical students. I hope to someday, in the very near future, make this a viable profession for myself. And I have friends who want to do it with me, which makes it that much more exciting.
    Cake Boss Cake- I was fortunate enough to get a Cake Boss Cake for my 25th birthday. I will never forget when I actually took a bite of cake and realized, “this is actually from the Cake Boss!” I’m sorry to say, but I thought, “I feel really cool right now!” And knowing that my family and friends were there to celebrate with me made it that much more special. I can’t believe it’s been almost a year already.
    See AXIS for the first time- I had a wonderful opportunity to see AXIS dance company, a contemporary physically integrated dance company, actually in my own state. It was amazing to have the opportunity earlier, before I started the blog in 2008, to learn to dance with them, but another thing to see them dance professionally on a stage in my own city. I was thinking, “Wow! They are amazing, and I had the opportunity to dance with them? What a lucky girl!” I hope to dance with them again in the future.
    Vacation- I traveled only a little bit during these 4 years, with the exception of Israel, but I loved the places I went. Even if it was just to Wisconsin with my grandma, or Chi Chi. Sometimes, it doesn’t matter where you go but the people you are with. And oh yes...how could I forget? My first skiing trip. That was something I wanted to do for a long time...and I look forward to skiing again in the future. Since my first time I skied, I skied one other time as well. I absolutely love the feeling I get when I ski; it is so exhilarating! And for the first time in my life, I am actually excited for winter to come around..because it’s SKI SEASON!  This summer, I’m going on a camping trip with Maine Niles Special Rec. Association, and also, I am going to go visit my cousin at Eastern Illinois before he graduates. This is another thing that was on my bucket list. I will probably talk about this, as well as the camping trip, in my first post at 504.
    Met Samantha Abeel (one of my heroes)- Meeting Samantha Abeel, the author of My Thirteenth Winter and Reach for the Moon, gave me hope that, despite my math disability, I can get passed things in the same way that I can get passed things despite my physical disability. Therefore, she is another one of my heroes. 
    Surprise my parents- Having the opportunity to work with my grandparents to surprise my parents really really made me happy because I felt, for the first time in my life, I was actually giving back to them. When you have a physical disability and depend on your parents for so much for so long, it is hard to give back. I know that my tree is a little shaky right now, but I know that the roots are there and I am hoping that, with a little watering and a little TLC, they will be fixed very soon. 
    Teddy- Oh my Gosh! I can’t believe it has been almost 2 years since I got Teddy. It feels like yesterday! Teddy is not just my third pet at the Purple Pad (including the frogs) but he makes life that much more meaningful. I love my man’s best friend. I hope he adjusts well to 504. Woof! Woof! 
    Toastmasters- The experience of Toastmasters has brought me so many things. It has brought me newfound confidence, new skills, and hopefully if all goes well, a profession and a business partner. Keep your fingers crossed for me. I am in the very beginning stages of seeing if this can actually become a reality. I never would have thought that being part of a club would bring me so many wonderful opportunities and newfound skills. I also believe that, because I am in toastmasters, I believe I am teaching others about how to help people with disabilities, how to treat people with disabilities, and there is more to a person than just meets the eye. All of those things combined gives me such satisfaction. The fact that I am learning and teaching others makes me feel like I have a real place in the club.
    Playfair begins- I had my first year of Playfair, the after school program to teach kids about disability and social justice issues in an informal setting after school. Though this was not as successful as I wanted it to be, I realized that the kids did learn a lot when I sat back and looked at the year as a whole. And I also realized that this was just the first year it ever came to the US. So, for a pilot year, it wasn’t that bad. And I look forward to seeing where it goes next year when my mom and I go to another school. We don’t know where we’re going yet, but hopefully near Caruso, where I was this year.
    Paula visited 2 times and Marva visited- I will never forget the times that me and Paula spent together when she came and visited in 2010 and 2011. Paula is coming again this summer from August 30th to September 2nd. It can’t come soon enough! Paula- come to chi-town NOW! In the same way that I will never forget the times I spent with Paula, I will also never forget the time that Marva, one of the Israeli citizens from my birth right trip, came to visit me and Lindsy. Unlike Paula, however, this was totally unexpected! This is someone who came across the Atlantic Ocean to see us on her visit to the United States. It was so nice to see her especially since I thought I would never see her again. I guess things happen when you least expect them.
    Flexibility- Over these past years, my parents and I have really had to be flexible even when we didn’t want to. But, in order to make things work out for everyone, I have learned that I have to put on my big girl pants and do what’s best for the situation even though sometimes, because I’m human, I really don’t want to.
    The opportunity to speak at Lekotek- Having the opportunity to speak at Lekotek was the greatest honor I have had so far in my 25 years because, when I first came to Lekotek, I was just 4 years old. And now, they remembered me and were impressed by me enough to invite me to come and speak at their annual gala downtown. I honestly wouldn’t have thought that someone of my age would be asked to speak at such a formal event. This was my first official speaking engagement where it was basically just me and another family.  And that within itself is a gift. The fact that Lekotek did so much for me, I felt like I just had to say “yes.” It was my way of giving back to them. Thanks to that experience, it has motivated me to do more in the form of professional speaking. It hit a spark with me, and as most of you know, once a spark goes, I just keep going. 
    First serious boyfriend, Ryan <3 – I am blushing just writing about this, so I am not going to spend a lot of time on this, but I am sure you are wondering. I am sure you guys are saying, “You haven’t talked a lot about Ryan lately, how is it going?” Well, it has been 5 months since I wrote the post, but 6 months since we met. For the record, I am saying this on both of our behalves, I am tired of the rumor that people with disabilities can’t date- because that isn’t true. Things are still going strong. I love the times we spend together, even if it’s just talking in my room. I hope he does too. 
    Dealing with doctors- I have not only had to learn about dealing with disagreements with a roommate and disagreements and awkward situations with assistants, but I’ve had to deal with difficult situations with doctors. Now that I am older, I go to a lot of appointments either being dropped off or it is just me and my assistant. I have to deal with a lot of uncomfortable situations that I never really had to growing up because my mom was there, so I really never experienced these situations before. But now, that I want them to talk to me and not my assistants, it has become a problem. That is why I am so adamant on making it my life mission to speak to future doctors and nurses so that I can make a change. Yes- I can’t change all the doctors, but if no one does anything, nothing will get done. These experiences have opened up my eyes to what real life is like, and reminded me again that, yes, I am an adult.
    Teamwork- Even though I don’t like to admit it sometimes, teamwork is a big part of making my life at the Purple Pad successful. Sometimes I don’t like it because I want to make all of my decisions like an able-bodied person would be able to. But I know that there is more to my life than just decisions. It is who is actually going to be with you when you make that decision? Who is going to drive you when you make that decision? And when I made bad decisions in terms of letting people go on my own, I wouldn’t look at the big picture and looked at the immediate frustrations. See what I mean about life lessons weaving throughout my blog entries? It gets me every time.
    In summary, I will miss my apartment here because it was my first apartment and has really become a home to me. I will always remember the memories I had at 607 thanks to this blog but I’m looking forward to the new memories I create at 504!
Write to you in 504. Until then, bye from 607.

-Jessi, Teddy, McDreamy, and McSteamy

Thursday, July 5, 2012

A New Window to the World

When my family and I figured out a way for me to navigate the computer and type on it efficiently, this was a new window to my world.  Though I do not type by myself all the time due to fatigue, I am still able to do so 95% of the time.  About three or four months ago a new window to my world was opened up when I got my i-phone.  I was dreading getting a new phone because, like I’ve said before, I usually do not like change.  And in the same way that I was uncomfortable with the computer when I first started, I was uncomfortable with the concept of an i-phone.  I was thinking, this one is fine.  There is no need for me to text, people understand my limitations.  Many statements were going on in my mind, like these, as my mom was trying to convince me otherwise.  But now after having the phone for about six months, I have realized that this is like the computer, another way to level the playing field for me and be like my peers.  So, it has reminded me that before I say I can’t, I should say, why not.  There is a famous quote that I just put in one of my speeches by John Wooden that reads “Do not let what you can’t do interfere with what you can do.” I see now that instead of letting the door close, I was able to open up a new window for myself.  I would like to finish with some of my speeches that I have been working hard on because being in toastmasters has opened another window to my life and taught me a lot about being confident, knowing how to speak in front of lots of different groups, being on a time constraint and giving yourself time.  And, the one I’m struggling with the most, being ok with making little mistakes along the way.  I don’t want my audience to notice or feel bad for me based on what they see.  Here are my speeches 5 through 7.  I hope you enjoy them, and I would love any feedback you have for me.  Don’t be shy- it’s how I learn to become a better toastmaster.  So think about how you can create a new window to your world.  And when you are afraid to try something new, think before shutting the window.  I know that there is going to be a little rain sometimes, but if you don’t try, you’ll never get the chance to see the sun poke through.  I hope it’s sunny through your window wherever you are.



P.S.  Here are the speeches...

Speech #5

Did you know that over 90 % of communication on a daily basis is non-verbal?

Yet, we are intimidated by those who communicate differently than us.  Don’t be!

Let me give you some examples of non-verbal communications we use every day:
·   When you email or text a friend, both are forms of
non-verbal communication.
·   A simple smile or frown to a friend is also non-verbal communication.

Other forms of non-verbal communications are:
·  American Sign Language

You’d be surprised how
many famous people communicate non-verbally.

Two that come to mind are:
·   Stephen Hawking, the British physicist, who communicates using a voice synthesizing device.·   Roger Ebert, the PBS and
Sun-Times movie critic, uses a different synthesizing method.

Now would you be intimidated to communicate with them?

 Of course not!

So why should you be intimidated to chat with any of my friends who communicate non-verbally with the world?! 


Let me introduce you to
TWO of my best friends:

First, meet Halley.

Halley is a college student who is studying communication and wants to become a motivational speaker (like us Toastmasters).

She composes her speeches with her index finger on her computer and uploads them to her Dynavox augmentative device which verbalizes them.

For conversations, she selects the right words or types them in letter by letter on her Dynavox.

Second, meet Chris.

Chris uses a “Pathfinder” picture-oriented augmentative device to construct sentences.

He selects pictures, or types in words one letter at a time, and the device speaks them.

Chris has not yet decided on a career but he likes performing and to be around children.

As I tried to show, both of my friends communicate non-verbally in different ways.

If you met either of my friends on-line, you’d never know they use communications devices as their primary form for communicating.

Don’t think that they are not smart  just because they communicate differently.

My thoughts are best summarized in a quotation
I found on-line:

Don't judge me
until you know me. 

Don't underestimate me
until you challenge me. 
And don't talk about me
until you talk to me! 

Speech #6

Imagine you are in a doctor’s office. 

Blah, blah, blah, blah… 
I am here. 

Dr.  Dr. 
 Do you see ME?

I know you see this metal 

but do you see ME 

I know I am small, 
but do you see ME?  

I know I might look like a complicated case, 
but out of this chair I am a just person like you. 

Now do you see ME

I want the best for ME. 

I work like you work. 

Now do you see ME? 

I went to college like you.

Now do you see ME? 

I have a family like you. 

Now do you see ME? 

I have friends like you. 

Now do you see ME? 

Do you really see 
Jessica Laurel Martin? 
---------- Transition from Opening to Body --------

Mr. /Madame Toastmaster, Fellow Toastmasters & Guests. 
What I just described is what I wish I’d said to one of my doctors 
 but was too
lady-like to say it. 

During that visit, he talked only to the person who accompanied me 
 and not to ME! 

Did this ever happen to you? 
 Of course NOT! 

 when a doctor sees me as a THING and NOT as a PERSON!

I’m NOT a bunch of symptoms!

Young doctors are not taught “sensitivity” in medical school, 
 or how to address “challenged” people as adults and not as children. 

This whole situation bothered me, 
 but I’ve come to
realize that unless 
 I DO SOMETHING about it,  NOTHING will happen! 

So, I plan to make it my mission to speak to future doctors and nurses in training.

I’m going to say simply “Treat disabled people WITH RESPECT!” by talking TO THEM <
Pause>and NOT to their caregiver. 

Another issue I have come across is when I am in a restaurant. 

Waiters and waitresses
aren’t any better than doctors when it comes to treating me with RESPECT. 

One time I visited my favorite restaurant on a date. 

When it came time to order, the waitress asked my date “what does she want to eat”. 

EXCUSE ME”, I wanted to say,
“I am a 25 year old college-educated young lady who can tell you what I want to eat

Don’t you see ME?

I get SO FRUSTRATED when waitresses don’t TALK to ME 

or don’t SEE ME as a person! 

Or worst, when they offer me crayons to amuse myself. 

Don’t laugh 

This actually happens to me quite frequently when I
eat out with my parents! 

Would this ever happen to you while you were dining out? 


So why does this happen to someone like me!

I WILL “fight back” by going onto yelp.com or jjslist.com to 
critique businesses on how
well they treat people like me.

------ Transition from Body to Closing -------

Tonight I vented my frustrations with two personal stories illustrating when I was NOT SEEN as a PERSON! 

I also shared how I plan to get doctors and waitresses to “Treat disabled people WITH RESPECT!”
  Do you see me? 
Mr. /Madame Toastmaster

Speech #7

Mister/Madame Toastmaster, Fellow Toastmasters, & Guests.

Today I am going to
·   Start by telling you
who is a PEZhead.
·   Continue with a brief history of PEZ candy and its dispensers that I researched on-line.·   Then, why I started collecting Pez dispensers and
became a PEZhead.
·   And end with pictures of my favorite dispensers in my collection.  

Slide 2 - PEZhead----------- transition Opening to Body --------

A PEZhead isn’t just anyone who collects just a few
Pez candy dispensers. 

A PEZhead is someone who is fanatical about collecting every Pez dispenser ever made

Like me! 

Whenever I go/step into a candy store,  I am immediately drawn to the Pez section.

Slide 3 - Squeal

I squeal with excitement if my brother or I find one I don’t have.

Pez candy was invented in
nineteen twenty-seven by an Austrian candy maker. 

That was the same year that Charles Lindbergh flew solo across the Atlantic. 

--- Pfefferminz slide---

The name P-E-Z comes from the first, middle, & last letters of the German word for Peppermint –
 Pfefferminz  -- which was its original flavor. 

Pez was originally packaged in small, hand-held boxes similar to modern Altoid tins and sold as an alternative to smoking

--- Plain-top Silver dispenser slide---

The first plain-top dispenser  which was invented after World War 2,  was shaped like a BIK cigarette lighter. 

Some of you carried one as a kid.

Slide 6 – PEZ poster

Pez first came to the US in nineteen fifty-two during the Korean War. 

--- Santa & Mickey dispenser slide---
Three years later, the Pez Company added character heads like Santa Claus & Mickey Mouse on dispensers, <& marketed the smoking mint to kids as candy in new flavors. 

That same year, McDonald’s drive-INs started popping up across the US. 
umpkin head Slide
When I was 8, I was given my first Pez dispenser, Pumpkin-head, & began collecting Pez dispensers because they were inexpensive and unbreakable. 

I still collect them today because there are so many colorful old Pez dispensers, 
& new designs every year. 

I have over five hundred individual dispensers or collector sets in my collection. 

Among my favorites are:

A 2009 “Wizard of Oz” 70th anniversary collector set. 

A 2010 “Snow White & 7 Dwarfs” collectors set; set slide

A 2007 80th year limited edition set ; 

And a “Hello Kitty” collector set. 

Among the ones on my birthday wish list, are: 
ET set slide\
A 1982 limited edition set. 

A limited edition set; 

Or any new 2013 designs. 

Today/Tonight I began by defining is a PEZhead. . 

I continued with a of PEZ candy and its dispensers. . 

I then told you collecting and became a PEZhead. 

And ended with of my favorite dispensers, 
and some on my that I am fanatically hunting to add to my collection. 

Don’t I have a ? You too could be like me! 
Mister/Madame Toastmaster