Home Sweet Home

Even though October and November was filled with amazing events including: being part of a physically integrated dance panel discussion, having a cake made by the “Cake Boss” for my birthday, seeing my favorite physically integrated dance group AXIS Dance Company, and a family a trip with my mom and Grandma also known as Chi Chi to Milwaukee. It was a very difficult time for both me and my family because we didn’t have consistent evening staff, which meant I was going to my parents just about every other day.  I felt like a person who is always traveling for business, only in my case I often didn’t know when I would be traveling until hours before.
I love my family, and my family loves me, but it was during this time that I realized the importance of consistency in my life.  Also this period of time was a great example of how quickly your life situation can change at the drop of a hat.
As 2011 comes to a close  I am grateful that I have a family that is always there for me and that I can once again live in the purple pad the way I want to.
May your home be filled with lots of warmth, joy and love this holiday season.
-Jessi

Unexpected

     This year I am thankful for something that I never thought I would be thankful for. That is my disabilities. Yes, I said my disabilities. When I was born my parents could have said "this isn't for me” but instead of that, they decided to take the challenge on and I am so greatful they did.

       If I did not have disabilities I probably would not have any idea what physically integrated dance was, let alone have the opportunity to do it, and speak about it on TV like I did this month. http://abclocal.go.com/wls/story?section=news/disability_issues&id=8435701 If I didn't have disabilities, I probably wouldn't be working with students on disability and social justice issues or have the opportunity to work one on one with families to better the lives of people with disabilities. 
       By having disabilities I am able to teach people about patience and acceptance. My situation has taught me to always take my time, and that there is almost always another way to do what you want to do in life. As my friends Mike and Tim say, "Improvise, Adapt and Overcome." 


Happy Thanksgiving from my home to yours.

Jessi

Ps. My little boy turned 1 on November 16th

Journey to the past

Just as the colors of the leaves started to change two of my assistants had to leave but I am not going to dwell on that because I now know it comes with the territory and life can always be worse. I had a wonderful opportunity to speak to an organization that used to help me when I was little. I felt really greatful and honored to be able to have this experience because when I speak in front of large groups I am hopefully helping families see that with the right supports almost anything can be done! Here is the speach.

Hello, my name is Jessica Martin.

[PAUSE]

As you know Lekotek makes the world of play accessible to children with disabilities by providing adaptive books, toys, and computer equipment.

[PAUSE]

My family and I participated in Compuplay in 1990, when I was 4 years old, where we could play together as a family and with other children with toys and computer equipment.

[PAUSE]

During one of these play sessions I was asked to be part of the video you just saw being produced by Lekotec explaining their mission.

[PAUSE]

When I was asked what I liked best about Lekotec, I said “I like the computer because it talks to me.”

[PAUSE]

I credit Lekotec for propelling me to strive to achieve my fullest potential- because it focused on what I could do.

[PAUSE]

Little did I know how helpful this tool would be later in my life.

[PAUSE]

Because I have focal dystonia in my eyes, a movement disorder due to my cerebral palsy, I often lose my place while reading.

[PAUSE]

Tonight I am going to talk about my boyfriend “Alex” and some of the adaptive software that has helped me become more independent over the years.

[PAUSE]

Having a computer with the ability to talk to me, a feature that I thought was merely “cool” when I was a 4 year old girl, became indispensable to me as an adult.

[PAUSE]
Not only is it “still cool”, but it is now a key to my independence!

[PAUSE]

Now that I am working and living on my own, I mostly use co-writer.

[PAUSE]

It helps me to type emails, to communicate via Facebook, and maintain a blog like any other young adult.

[PAUSE]

For example, the other day I was on Facebook and I said to myself

[PAUSE] “This looks interesting” [PAUSE] but I couldn’t really read it.

[PAUSE]

So I asked “Alex” to read it to me.

[PAUSE]

The article on Facebook mentioned courses I could take so that I could become a certified Life Coach.

[PAUSE]

I was so grateful that my computer could read it to me because I am really interested in getting my certification as a Life Coach. [PAUSE]

Being able to read about Life Coaching programs and other programs online

[PAUSE] ultimately will open new doors for me [PAUSE]-whether it be more education or a new career.

[PAUSE]

I am forever blessed to have different types of technology in my life

[PAUSE]

because without them, I would not be able to communicate efficiently with my friends who use communication devices.

[PAUSE]

I want to help people who use communication devices because I believe everyone should be heard!

[PAUSE-closing]

Finally, I have to thank “My boyfriend Alex” the voice on my computer who makes it talk to me and never lets me down!

[PAUSE]

Without him I wouldn’t be able to communicate with the world and have my independence.

[PAUSE]

As you can tell I still like my computer because it talks to me and I thank Lecotec for allowing me to experience the world of play and for the opportunity to speak in front of you tonight.

With all of my gratitude and a very fun Halloween!

-Jessi

The Visitor

I couldn’t let this month go buy without talking about my visitor. She is way more then a visitor. She is like a big sister to me. We don’t get to see each other that often because she lives in Champaign but when we are together it is like no time has passed.
We laughed until our stomachs hurt and ate lots of junk food. My assistants were really good about making sure both Paula and I had a weekend to remember. They were fantastic about helping both of us when we needed it as well as giving us private time together and that means the world to me.
Over the weekend we went to Comedy Sportz and the body exhibit at the Museum of Science and Industry. We had a blast at both of these places but we both agreed by the end of the weekend that we would have had fun wherever we went. This was the second year that Paula came to visit me and we can’t wait until next year.
Missing you already,
-Jessi

March on for Michael

I can't believe that as of September 1, 2011 I have been living in the purple pad for three years! When I told my assistant Mina this she said "Easy to say, but hard to accomplish." She couldn't have been more right. I often talk to my friends that also have assistants and we say having an assistant is like having a full time job, but well worth it. There is one person that won't be able to share in this milestone with me in his physical form, but I know he is still there for me. He helped me through the first two years of living on my own and I am so proud to have known such a wise and inspirational person. That is Michael. However, I know he would want me to remember the good times rather than dwell on him not being here. So therefore I'm marching on for him. Since this post is the "Anniversary Post" I have decided to break it up into three parts, Life at the Purple Pad, Work and Play.

Life at the Purple Pad...

This past week has been a bit crazy, thank you to Rebecca, Brenda and my parents for pitching in at the last minute. Though it's been like a game of hot potato with me, I've come to realize that it comes with the territory. Unfortunately it won't end until Tuesday night. I'm happy to say everyone is o.k. now. I often tell my parents for the most part as long as I have a roof over my head and something to eat I don't care where I sleep. Even though everyone wants to be in their own home Teddyhas become very aggressive over the past few weeks, we've been doing some serious training with him. I think he's in his terrible two's, if there is such a thing for dogs. Oh yeah, he's not even one yet! Right now I like my assistants, everyday is not perfect but the gifts and talents that they have in their own way makes my life complete.

Work...

I am still continuing to work with the Illinois Association of Microboards and Cooperatives and every time I work for them the job continues to be more and more rewarding. I am also starting to work with my mom on the program that originated in Canada. I talked about it in a previous post. I'm so excited to be working in a school and making a difference in childrens' lives. I'm also looking forward to having the opportunity to put my skills from my human services degree to use by running a group. In an extra added bonus, the teacher advisor co-running the group with me has a huge Pez collection all over her classroom. It was meant to be!

Play...

I'm loving my experiences at Toastmasters and was even asked to be Lekotek's main speaker for their fundraiser on October 21st. Now some of you might be thinking, what is Lekotek? It helps families with a child or children with special needs learn fun, creative, and helpful ways to play together. I was involved in this program at a very young age. It's helped me throughout the years to become more efficient on the computer. If you would like more information on the event please let me know. I'm also very thrilled, my dance program has started up again! We are doing amazing things and I'm having the chance to dance in and out of my chair, I love going there because there is no judgment. Everyone is accepted for who they are and they are a gift to the piece of work in their own way. We are a family in the way that no one could do it without the other one. Our gift of collaboration and a commitment has made this program so successful. I can't wait to see what will come of it in the next few months, since it was so fantastic this month I see nothing but more positive energy.

So, on that note I'm marching on for Michael.

Jess

Letter From Teddy

Hi everyone! For this post I have decided to take a backseat and let Teddy do the talking. Ruff! Or Hi! My Name is Teddy, The unofficial service dog. I have been living with Jess in the purple pad and my wonderful friends which she calls 'assistants', but we are both at a loss. I can't get the process of walking down. Whenever I see a car or a person who I am not used to, I get nervous. I know I am not supposed to look like a person, but I act like a person by standing on my legs. It's all that I know. I don't know what to do. Jess told me that her friend Paula is coming in for the weekend. I hope I'm not scared of her and start acting like a person because I really don't want to do it. Please help us. She says that you guys are very helpful to us. Thanks again!

Ruff!

Teddy and Jess.

P.S. Next month she plans to tell you about her next speaking engagement weekend with Paula and upcoming plans for her education and work. Stay tuned.

Say Cheese!

Last month I talked about “flying” to your best potential and living life in balance. And Scott Crane a friend of mine was the epitome of this. He unfortunately lost his life to a rare form of muscular dystrophy. However his memory and philosophy of life will always be in the people he touched. Here is a quote from him, "I am planning on trading in my body for a newer pain free model. I am keeping my original face and heart. When some things are that perfect there is no need to improve them…I want to keep my disease [as well], I do not even mind having that. It is a HUGE part of what has made me the kind, compassionate, sensitive, selfless, and helpful person that I am." He also would end his emails with “spread smiles.” Like Scott said, I have been spreading smiles by working on a project with my mom that originated in Canada we want to help educate junior high and hopefully high school students about disability and social justice. The idea is to have them work on something related to disabilities weather it be a poem, song, or plays and bring it out into the community. I have always wanted to work in a school setting and this is once again following one of my dreams. I also have been working on setting up a book club for people with communication difficulties because I believe everyone deserves the right to say what’s on their mind.
The disability pride parade is just around the corner. My dancers and I are really excited! It is on July 23rd and we would love to see you there. If you can’t make it then don’t worry because it will also be performed at the studio where I dance on July 29th and 30th. I am overjoyed because I just found out today that my piece is the opening number for the show. I am speechless. In terms of smiles and happiness this is in a league of its own.
I have been feeling very fortunate lately in addition to my dance, two of the young adults that I work with are now happily living on their own with supports. The fact that I am not only living on my own but helping others to do the same makes me feel wonderful.
As you can see I am extremely happy. My new assistants are amazing and everything is great but I would love it if you can help me with something. You see with only three months until my birth day I would really appreciate if you could do one of three things one tell your family and friends about keep on keeping on and what they do, , volunteer for them or donate money to them any amount will do. Let’s make a difference and spread a smile or two.
Say cheese!
Jessi

Behave like a butterfly

Here is a snap shot. For those of you who don’t know that is when I want to include something in the post but don’t have a place to put it. At the bottom of the post I have put three speeches for your reading pleasure. The first one is my speech from the keep on keeping on awards night and the last two are my speeches from Toastmasters the first one focuses on getting comfortable speaking in front of a group and the second one witch I haven’t given yet, focuses on organization. I would appreciate any feedback. Also starting in July my blog will have a facebook page. Thank you Kristin for the idea.

As Oprah, Glee, Gray’s Anatomy and Extreme Makeover home Addition ended so did my time with Tonya. After lots of interviews we thought we had “the cat in the bag” with three new assistants but once we had the training two of the three decided this job wasn’t for them. At first I was very discouraged but I was not willing to give up and thought there is a reason for everything. Thank you to mom, Mina and some of our friends for helping us through this process together we are a force to be reckoned with. In a few short days we found one more very outgoing and enthusiastic young woman however, the two new people cannot start right away so my parents, Mina and Lindsy have agreed to take on other shifts for a little while. You all are the best. Until we had enough assistants even though I was optimistic I was concerned about how I was to going continue to live on my own. Then one night as I was thinking about life I looked at my bathroom shower curtain filled with butterflies. It was then that I realized that we need to behave more like butterflies. What do I mean by this, I mean that just like butterflies we need to stop flying for a while, sit on a flower and enjoy what is. A lot of times we are always searching for the newest car or the newest TV and we don’t take enough time to enjoy what we do have in life. On the other hand if we have a problem in life we often settle for what is instead of fixing the problem and having assistants helping me every day has help me overcome these issues. I am learning that I cannot take them for granted but if there is a problem with one of them I should try to fix it instead of just complaining about the situation. I am not saying that you should not dream rather to work on finding a balance between the two. I am actually working on two dreams right now which I will talk about in my next post.

Keep flying!

-Jessi

It takes a village to get things done even in 2011.

After months of bringing my dad’s handy man over to both my apartment and my parent’s house we were starting to get annoyed because my chair kept breaking down. This went on for quite some time.

Then when we realized that the situation wasn’t going to get any better, we called the insurance company and they said they would pay for a new power chair but not the kind of chair that I had before that would stand and tilt. It is extremely important for me to move like this in order to stay loose and not need surgery. Wouldn’t you?!?!? So my mom said, “Why don’t you contact Tim and Keep On Keeping on and see if they can help you.”

I was so excited that Tim was on board. We began fundraising immediately. Little by little donations started coming. Then when it was holiday time and my chair wasn’t here yet Tim asked me if I wanted to be in the Santa Cause 6 Auction. It was a lot of fun and I got auctioned for a ton of money for my chair.

On January 30th my version of Extreme Home Makeover came to my house. Tim and Dave showed up with a life-sized check for $10,000 which was the full amount of money I needed for my new wheelchair. I was in total disbelief because I was unaware that an anonymous donor had written a check for the balance of my goal. I would not have gotten this great new wheelchair that meets my needs without the support of KOKO, my family and friends. I have heard that lots of people with disabilities are afraid to reach out to their community and organizations like KOKO for help and support, but it never hurts to try.

I am forever grateful to all my little angels who wanted to see me keep rolling. Whatever your obstacles in life, believe in your goals and dreams, never give up and Keep on Keeping On!

Hello fellow Toastmasters and guests.

Tonight I will tell you about me –

1) My daily challenges;

2) My life philosophy;

3) My passion; and

4) What I love to do in my spare time.

I have cerebral palsy, which
affects all four of my limbs.

The uncontrolled and involuntary movement
that I have in my hands, arms, feet and eyes – coupled with tight muscles –
makes it hard for me to do everyday tasks like dressing or fixing a meal.

So I have assistants who dress me,
cook for me and drive my van.

I am very fortunate to have family and friends who always “have my back”.

Without the combination of my
family, friends and assistants,
I would not be able to get through the day.

I believe that there’s a reason for everything in life, and even though everyday is not perfect, it is the gift of a challenge that keeps me going.

My life philosophy is best summarized
in the words of the famous UCLA basketball
coach John Wooden. He said:

Don't let what you can’t do
interfere with what you can do.

When I decided to get a Human Services degree from Oakton Community College,
I didn’t let anything get in my way of
achieving it!

Likewise I won’t let anything get in my way to achieving a Toastmasters CC award, no matter how long it takes me!

I am really passionate about helping others who have difficulty communicating
or who use communication devices.

Everyone deserves the right to
say what’s on their mind.

I also love physically integrated dance or PID. PID is when dancers, with and without disabilities, dance together.

I love it because when I dance I feel free of my wheelchair
and not disabled
if only for a few moments.

---- ----

Tonight I introduced you to me.

I talked about

1) My daily challenges;

2) My philosophy to never let anything get in my way from achieving my goals;

3) My passion to help others to communicate;

4) and finally my love for
Physically Integrated Dance.

In my future speeches I'll expand on each
subject I briefly mentioned tonight, and reveal more about me.

Mr. /Madame Toastmaster,
fellow Toastmasters, and Guests.

------

How many of you are curious how I live
each day?

<PAUSE, look at Audience>

Tonight I’m going to talk about the plethora of adaptive technology I use every day.

-----

I feel very blessed to live during a time when such technology is at my finger tips.

--------

Not only is it fun to use,
but it gives me independence!

--------

It’s what makes living with Cerebral Palsy
NO BIG DEAL to me!

<Pause – begin Body>

As a person living with Cerebral Palsy,
I have 3 main challenges:

1) Limited Mobility;

2) Limited Dexterity;

3) And Limited Vision.

------

From the moment I wake up in the
morning I am completely dependent on
my power wheelchair for mobility.

-------

It has head lights, tail lights, and costs $47,000 – <PAUSE>
as much as a Mercedes Benz.

-------

Best of all, its fun to drive -- <PAUSE>
and I don’t need a driver’s license. <SMILE>

-------

Before I had my high-tech wheelchair,
I was completely dependent on
my assistants for changing my position.

------

Now with a push of a button I can
stand up, tilt back, recline,
rise up to reach something
and stretch my feet
<PAUSE> – all by myself. <SMILE>

-----

<PAUSE>

Once I’m placed in my wheelchair,
and my cell phone is attached to it,
I’m ready to start my day.

-----

My cell phone is my lifeline to the world.
Is yours? <PAUSE and SMILE>

----

Because I have limited dexterity in my fingers I need a phone with 3 features.

----

1) First, a cover that slides open rather
than flips open, because
it’s easier for me to use.

-----

2) Second, a large screen because
it’s easier for me to see.

-----

3) Third, easy-to-press buttons. <PAUSE>

<PAUSE- shifting subjects>

Like any young adult I communicate
through e-mail and Facebook.

----

But, because I can only use one finger,

<Pause, hold up left finger>

Typing is very time consuming for me.

---

Luckily I have adaptive technology
to help overcome
my limited dexterity, and
my limited vision.

-----

To help me communicate better through
e-mail and Facebook,
my Apple laptop is set up with:

1) A trackball mouse;

2) Oversize icons and cursor;

3) Oversize letter stickers on all keys;

4) And adaptive software that
helps me to read as well as to write.

----

---
----

----

· To compose an email,
I use a program called Co:Writer that
predicts words as I type them.

---

· When I finish a sentence, Co:Writer
reads it back to me.
<PAUSE> Isn’t that neat?

<Pause, catch your breath>

Tonight I talked about my
3 daily challenges:

1) Limited Mobility,

2) Limited Dexterity;

3) And Limited Vision.

-------

And how my wheelchair,
my cell phone, and the plethora of
adaptive software on my computer
help me deal with them.

-------

To some of you, my life may appear to be full of INSURMOUNTABLE CHALLENGES!

I am not Superwoman! <Pause>

----

But I’ve learned to adapt <Pause> and
not let ANYTHING get in my way!

----

With the help of my wheelchair, cell phone,
and computer, <Pause> living with Cerebral Palsy is NO BIG DEAL to me!

Mr. /Madame Toastmaster