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

The Joy of Spring

As the rain hits the windows of my apartment I am not upset because I believe it is a way for G-d and the people that I miss who are no longer with me physically to talk to me. It is the beautiful changes that happen this time of year that after 24 years still amaze me. Even though everything is taking a while to show up on the trees I know that spring will come and this is just G-d’s way of teaching us a big lesson in patience. Spring has a lot of little tiny miracles that we often take for granted like the birds coming back and the leaves on the trees showing again. I am very happy to report that even without physical therapy I am experiencing more movement in my body. I believe it is the gift of the spirits that care about me that are helping me to move more easily. After 24 years of being in my situation I didn't think this was possible but it is and all it took was patience and faith. This month I got asked to help remind people when our next dance workshops will be as well as remind people about rehearsal for the Disability Pride Parade and organize the T-shirts. The best part of all this is the piece I choreographed is going to be performed I am so honored and can’t wait! I hope your holidays were nice and let’s remember to be patient because spring is just around the corner.

Happy spring to all!
-Jessi

Cheers!!

According to Maslow’s Hierarchy of needs I was having a feeling of disconnect when it came to belonging to the Des Plains community. That was because I would go to the library say Hello to my neighbors but that was about it, a few months ago I was a little sad because now that I wasn’t going to school, aside from dance I didn’t feel a sense of belonging. That all changed when I joined Toastmasters. It all began when my mom found a flyer at my library when she was getting books for my brother’s business. Toastmasters is a group of dedicated individuals from all walks of life who come together to improve their speaking skills and help other Toastmasters do so as well. I was worried about what they would think of me, but from the very start the other Toastmasters have been very welcoming. They look at me first and then say, “Ok, you have these challenges can we assist you?” One of the Toastmasters noticed I was having trouble keeping my place while reading, the next morning I found things in an e-mail from him that might make it easier for me to read my speeches in the future. Another person has volunteered to walk me home if it gets to dark. Even though I have taken a speech class in college and speak in front of a lot of different groups at work, I am still very intimidated to do my first speech because a lot of them have been doing this for years but I am also happy to be doing it in front of a supportive group of people. As a result of joining Toastmasters I am learning new skills, meating new people, getting homework, helping others and being a part of a group. It feels great!!!
Cheers
-Jessi

My Extreme Makeover

In today’s society some people are afraid to ask for help. We often think that our friends, family and greater community is to busy to help us or that asking for help would be too much of a burden on the ones we love. However, what I have come to realize throughout my work with the IAMC is that lots of people want the chance to help someone, they just don’t know how. The world is smaller than we think, everybody knows somebody. In the olden days people would help each other with everything without a question or hesitation. That is what you, my readers did for me. I expressed a need and you came through. I truly believe that if it wasn’t for your generosity and KOKO’s willingness to step in I, wouldn’t be sitting in this chair typing this. You all donated to me because you saw my true potential and the gifts I have to offer the world. By donating you not only helped me, but you helped spread the message of generosity and working together to make a difference. Here is the video of what I like to call my extreme makeover.

Now as expected with any new chair there are adjustments that have to be made to make the person more comfortable. After waiting a while I decide that I am hungry so my mom and I decide to get snacks by pushing me in an office chair. We ask someone in the hospital where we can get snacks and off we go. When we get in the elevator a little boy looks at us like we are crazy. I am sure he was thinking I have seen a lot of crazy stuff but this, this is crazy. I guess when there’s a will there’s a way.

Finally this month I got to go skiing for the first time. I have wanted to go skiing since I was ten years old, it was a long time to wait but well worth it. Now I am totally in love with the sport. I have never felt this way before, I can't believe I am saying this but for the first time in my life I don’t want it to stop snowing so I can do it again and again and again. For those of you who haven’t skied before go do it. It is very exhilarating. I can cross another thing off my bucket list. My next goal is to go skiing in Colorado and or Utah after all I would love to go skiing with my cousin Ben and I haven’t seen my camp friends in forever. Plus I have never been to Utah and hear that like Colorado they have a great program for people with physical disabilities.
Thank you for making it possible for me to keep rolling!
With all my love and gratitude,
Jessi