Baby Steps

Today marks the day of my second anniversary at the purple pad. I have definitely gone through several bumps. But, it has made me a stronger person. I have had to change a number of assistants. I have had to deal with having a room mate and not having one. I graduated from Oakton Community College and dealt with the realization about not being able to go to Northeastern this fall. But, throughout this whole experience. I have been reminded about a bracelet that my mom had given me. Its so eloquently reads." Its all about the journey not the destination." My journey has allowed me to stay in this apartment for two years with people who care about me and support me in my everyday life. Even though it has been two years. I am still amazed that this has become a reality for me. When, I first moved in. I felt like a little seed that was ready to grow. But, not sure of myself. Now, with the experiences that I have had in these past two years. I feel like I am able to do more things. With the help of this blog and the fact that I care about people. Another, one of my dreams has come true. I am beginning to motivate and mentor people that are less fortunate then myself. So, that their dreams of living independently or just their dreams in general can become a reality. Its all about the baby steps and that is how I got here. It was no magic pill or no magic fairy. It was just the love and support from my family, friends and readers. That helped me to be where I am today. I would like to also dedicate this post to my uncle Eddie and aunt Sherri in honor of his birthday. Thank you for being my most avid readers. Also, thank you mom for making sure my chair keeps rolling. I would like to end with this quote that I got from my friend Scott Crane. "It's not the disability that defines you, it's how you deal with the challenges the disability presents you with. We have an obligation to the abilities we DO have, not the disability". - Jim Abbott

Home Sweet Home

Jess

lean on me

I could not let this month go by without including this song!

Sometimes in our lives we all have pain

We all have sorrow
But if we are wise
We know that there's always tomorrow

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on

Please swallow your pride
If I have things you need to borrow
For no one can fill those of your needs
That you don't let show

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on

If there is a load you have to bear
That you can't carry
I'm right up the road
I'll share your load
If you just call me

So just call on me brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you'd understand
We all need somebody to lean on

Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on

Lean on me...

Thank you for your love and support!

Lemons to Lemonade

There is an old saying that says, "if you get handed lemons you have to turn them into lemonade." This month I have truly been put to the test to see if I can turn my lemons into lemonade in more ways than one. For several weeks now I have had an ongoing cough that the doctors aren't sure what is causing it; but when I think about it even though it has been frustrating beyond belief I think it has been nice because it has reminded me that it is ok to slow down once in a while. Then a few weeks after I had just gotten the cough it was time for orientation to NEIU. And despite my cough I was smiling from ear to ear with excitement. I had done what I needed to do, signed up for classes, gone to speak with an Academic Advisor and the Accessibility office; I was all prepared, or so I thought. At the end of the orientation my mom said, "I could have heard them wrong, but I think you need a certain amount of math courses." At this point I was like thinking to myself "no mom! I already got that under control," but I thought I better double check. So about a week later I made an appointment with the head of the Academic Dept. and sure enough I was not only required to take math classes but I was short 1 Fine Arts course and 3 science courses; 1 being a lab- which is extremely hard for me due to my visual limitations. For several days, I was like "what am I going to do?!" This has always been my dream and now I could not see it coming true. However, later that week after lots of tears, hugs and frustration- I met with my Voc Rehab Counselor and I am going to continue to pursue my career in the field of Human Services. I have decided to take a semester off and work by spreading the message of person centered planning and community living and choices for people with developmental disabilities.

I have come to the realization that I will probably not be able to get my Bachelor's degree due to my limitations, but I am not letting that stop me when it comes to learning. In the spring I plan to go to NEIU or Oakton to take at least 1 Communications and/or Social Work class to better my communication and people skills. So I can speak to lots of groups of people and spread the message of freedom and independent living despite having a disability.

I would like to thank Rebecca and Lindsy for helping me while Mina was in Mexico. I hope she had a great time and I look forward to seeing her again. Without the people that help me I would not have been able to continue my independent life even in the past 2 weeks, so thank you again.

As a result of me having this cough I have limitations of what I can eat and drink. Lemonade is one of them, so i am not asking for a miracle just for all of you to sit back and have a nice cold glass of lemonade for me. Thanks! Love you all!

-Jessi

P.S. Another way I was able to make my lemonade happen was I had a friend from my Birthright Trip named Marva come over to play games with Lindsy and me. We had a great time and this was especially memorable because I did not know if I would ever see her again. I love the time we spent together and I will always remember it.

Power of choice

I am learning not to take my independence for granted. Without my assistant's I wouldn't be able to maintain living on my own. It is very good to keep things into perspective. I would like to share a story with you. My family is trying to apply for CLIA (Community Integrated Living Arrangement) funding which will allow me to live in my own apartment and to take some of the financial burden off my family. I didn't realize this until after we started applying for the funding. But, it finally hit me. That I am dependent on people to help me. This is my reality. I than realize that independence is not necessarily driving a car nor physically putting myself into bed. Its about deciding when I want to go to bed or where I want to go in a car. For me its the power of choice. However, it doesn't mean that people such as myself want to be treated any differently. In fact, it brings me back to the statement"We the people want to be treated equal". That was said, several years ago by one of are fore fathers. So it is not a new concept. I want to thank Mina and Tonya for all they do to help support me on a daily basis. So, that I can have the power of choice. Happy July 4Th and remember that everyone has their own power of choice.

Love Jess

Hopes,dreams,and wishes

For June since I have had a lot of time on my hands, I have created a bucket list of things I want to do in the future, and I'm saying future because I don't want to think about things to do before I die.

Here it is:

1. Go adaptive skiing with my family

2. Help a person with a disability who is less fortunate than me

3. Get a dog once things are settle in the apartment

4. Visit Emily, Sarah, Paula, and Jordy

5. Get a chance to visit Europe and help people there

6. Have a chance to work with assistant dogs in some capacity

7. Have a chance to sit in a garden for as long as I want

8. Become a motivational speaker

9. Work with people who have communication difficulties, to better their lives

10. Have fun

I am suggesting that everyone creates a bucket list, it helps you to motivate yourself and have some direction in your life.

What are your dreams, hopes and wishes for the future?

I challenge you to think about that this month.

The flying butterfly

There once was a young girl who was nearing the end of high school and like most high school students she didn’t know what she wanted to do with her future but she was sure of one thing she wanted to go to college

One month before her graduation from high school the young girl had a meeting with her parents and teachers to discuss her future. At the meeting a lot of things were discussed but then something was said by one of the teachers that would make a profound impact on this young girls life. She said I think based on the fact that you have multiple disabilities you are asking too much of yourself and I think even going to community college would be to hard for you.

The young girl was devastated she didn’t know what to do. For weeks she was beside herself. Then one day in between sobs, she said to her mother and friend “I’m going to do it anyway, I’m going to college.” Now almost five years later, the young girl is now a young adult and will be completing her human services degree at Oakton Community College and in the fall plans to go to Northeastern Illinois University to get a major in communications and a minor in social work. Yes, that young girl is me, I’m not writing this to brag about my accomplishments, more to encourage my readers to never stop giving up or as they say in the song “Don’t stop believin’.” Yes, I needed help along the way from my parents, teachers, tutors and my aides, but who doesn’t? I would like to remind you of a character I was reminded of when I heard a speech this past weekend at a conference I went to as I was completing my internship. The character was the little engine that could. I was able to complete my schoolwork with the help of others, but also on the mere fact that I kept repeating to myself, I think I can, I think I can. What ever challenges come our way in life it is our responsibility to keep on going just like the little engine that could. Also, as I was going through the library of which I visit often, the experience of starting something new came in my mind, I was reminded of the book the very hungry caterpillar by Eric Carle. Though the book is very simple, it talks about how a caterpillar grew and grew into a beautiful butterfly. That’s how I feel thanks to all the people that believe in me and see beyond my disabilities. I could dwell on the fact that my teacher was negative but instead I’m choosing to focus on the positive parts of my life and use that negativity to motivate me to grow and develop into the person I want to be.
Thanks to all of you that support me and believe in me and have helped me to grow and develop into the beautiful butterfly. Finally last year I closed my school year with some goals I had for the next year. Here are my goals for this year…

1 Get good grades

2 Join a club, sorority or community group at NEIU
3 Practice with dragon naturally speaking

4 Have fun!

I would like to end my post with the lyrics from the song “Don’t stop belivin’” I really feel that it sums my story up in a nutshell.

Just a small town girl, livin' in a lonely world

She took the midnight train goin' anywhere

Just a city boy, born and raised in south Detroit

He took the midnight train goin' anywhere

A singer in a smokey room

A smell of wine and cheap perfume

For a smile they can share the night

It goes on and on and on and on

Strangers waiting, up and down the boulevard

Their shadows searching in the night

Streetlights people, living just to find emotion

Hiding, somewhere in the night

Working hard to get my fill,

everybody wants a thrill

Payin' anything to roll the dice,

just one more time

Some will win, some will lose

Some were born to sing the blues

Oh, the movie never ends

It goes on and on and on and on

(chorus)

Don't stop believin'

Hold on to the feelin'

Streetlight people

Love your butterfly!

Jessi

Helping hands!

I wanted to have a party for my mom’s birthday and my helping hands came through. I was so happy that I could make dinner for her at my own apartment, but I couldn’t have done it without the helping hands of Bari, Amy, and Mina, or as my dad says, BAM. Our menu consisted of caprese salad, lasagna with homemade meat sauce, courtesy of Amy, sautéed spinach, and garlic bread. For dessert, we whipped up a confetti Pilsbury cake, along with banana and chocolate crepes. I was so happy to have my first big home-cooked meal at my own apartment. Happy birthday, Mom! Hope it goes nifty at fifty!

Love Jess