Monday, September 29, 2014

"Life with Cerebral Palsy" with Stephanie Cox: Back to School!

In 2014, author Stephanie G Cox published her first book, “Gentle Firmness,” highlighting how Christian parenting sets firm boundaries and gently helps children learn to cooperate. She typed the 500 page book...with her nose. This is interview #2 of 12 to share with all of you Steph's story about, "Life with Cerebral Palsy."

(click here to read the introductory post)"

"Life with Cerebral Palsy: Back to School!"

At what age did you start school? Did you start at the same age as all the other kids?
I was three when I started preschool.

School pics from first grade to senior in high school. 

How did you get to school? Did you go by bus?
I took a school bus all throughout my schooling. It picked me up right at my house before school and dropped me off at my babysitter's house after school. The school bus had a wheelchair lift and special straps for wheelchairs.

Getting on the bus the first day of school in 7th grade. 1993

First day of school 6th grade. 1992

Heading to where my bus picked me up. 

Did you go to a regular public school or a special school for people with disabilities?
I went to all regular public schools. However, my parents fought to have me in a regular class full time. I was in a special ed class part time with me spending more and more time in a regular classroom for first and second grade. They quickly saw how smart I was and by third grade I was in a regular classroom full time except for special services like physical, occupational, and speech therapy. I also did homework in a resource room since it took me longer physically to do my homework.

What was it like at the beginning of each school year? How did you get from class to class and figure out your schedules? Did someone help you?
I got nervous and excited every year. Of course, there was always orientation to find classes. I had an one-on-one aide throughout my school career. I usually met her, if it was a new person, before school started. My aide took me to class or a friend.

All of my aides were adults. The school hired and paid them to care for me all day at school. But, all throughout my schooling, they provided time every day for me to work with my friends and other students without my aide.

Mom & me before school 1993.

All set for 6th grade. 1992. 

How did you navigate hallways? Did you have an electric wheelchair that you could drive yourself?
My aide or friend pushed me before I got my electric wheelchair. After that, I drove myself unless the halls were too crowded then my aide helped me. I did run a few people over sometimes if they wouldn't move. But, I went slow so it didn't hurt them. Hahaha! In high school, I left each class 5 minutes early to help make my next class on time.

Did your school have stairs? How did you do the stairs?
My grade school that I went to didn't have stairs. I couldn't go to the grade school by my house because it had stairs and it didn't have special ed services. When I finished grade school, I couldn't go with my friends to the same junior high because it had stairs and no special ed services. My high school and colleges had stairs but they also had elevators that I used.

How did you navigate the classrooms?
They just made a spot for me. I was even put on the floor for floor time activities. I never stayed in my wheelchair all day at school.

When they handed out text books and things, what did you do with them? Did they hand you a book or put it in your chair somewhere?
My aide took them and put them on my tray so I could see them, or put them in my backpack. I read and did assignments in and out of class like everyone else.

My backpack was always on the back of my wheelchair. 1992

Tori (6) asks: “How does she draw with pens?!” (Mother’s translation: she wants to know how you did your school papers when your husband wasn’t there to help you!)
I scribbled and colored like the rest of the children. I dictated to my aide or parents what to write and draw if it was an assignment that needed to be legible since I can't use my hands much.

How did you take tests and things before the invention of the iPad and your nose?
I dictated the answers to my aide. I taught myself how to type with my nose around age 9 so I used a computer too. But, test answers were always dictated by me. I took tests in a resource room or away from the students so they wouldn't hear my answers.

How did you write essay papers and learn math?
I dictated or typed with my nose for essays. For Math, I dictated what needed to be written, and used the clock to add and subtract since I couldn't use my fingers to count. Or my aide would let me use her fingers. I could use calculators with my nose.

Elisa (8) asks: How did you do your homework?
I dictated the answers to my parents and they wrote it down for me or I typed papers on our computer.

What did you do when you had to go to the bathroom!?
I told my aide and she took me to the bathroom. I had a special toilet chair that fit over the toilet at school like at home since I cannot sit up by myself.

Because your speech is unclear how did you communicate with your teachers until they learned “Steph-speak?”
Usually my aide and friends understood me so they translated for me. In 7th grade I got a speech augmentation device that I typed what I wanted to say and it would say it for me. I hated speaking in class so I was quiet unless I had to give an answer. 

People reading this who went to college and grad school with me are probably freaking out because I was the exact opposite. LOL! In college and grad school I was extremely outspoken in classes.

Did you have any teachers who were your absolute favorite and encouraged you? How did that inspire you?
I loved almost all of my grade school teachers and aides because they treated me like everyone else. They believed I could do whatever I wanted once they got to know me. 

I was always the student with the most severe disability from preschool to graduate school, so I had to prove myself every year. 

My eighth grade aide was my favorite aide because she hung out with me outside of school and encouraged me in my dreams and goals for my life. I loved her! I wish she would have followed me to high school. My high school experience would've been much better.

Did you have any teachers or aides who did the opposite? How did that make you feel?
My high school aide that I had all four years of high school was horrible. I had a love/hate relationship with her.

Just about every day she told me that I would never get married, go to college, have children. 

The first year I fell into a deep depression. Not only because of her but because I only had one or two friends, I couldn't go out like my friends did, guys wanted nothing to do with me, and I had family issues. 

Thankfully, I found Jesus before my sophomore year of high school, so He allowed me to keep using my strong determination to not give up.

I had what is called an Individualized Education Plan (IEP) from preschool until I graduated high school. IEPs list services the child with the disability needs in order to be successful at school. Throughout the school year, we'd have IEP meetings to discuss progress, needs, and future needs.

In high school, especially my junior and senior years, IEP meetings were horrible. My mom and I sat around a table with teachers and professionals to plan my life. Only, they didn't listen to my mom and me. 

My high school basically had me sentenced to life in a group home with me doing a boring, to me at least, computer job because I taught myself how to type with my nose. That is NOT what I wanted. 

Thank the Lord, my now-husband became my boyfriend during my senior year of high school, so he started coming to my IEP meetings as a "family friend" to help my mom and I get what I wanted and needed to be who I am today. Yet, another reason why I'm grateful to my husband.

Josh (12) asks: “What did the other kids think of you?” 
I had a lot of friends and boyfriends in grade school. Every once in a while a kid who didn't know me would make fun of me. But, my friends never ever made a big deal about my disability. They found a way to include me in everything.

Once I hit Jr. High, it all went downhill. I couldn't go to the same Jr. High as my friends because it wasn't wheelchair accessible and didn't have a resource room so I could get my physical and occupational therapy and work on my homework, so I went to a new school with new kids. 

I could not make friends no matter how hard I tried. And boys, forget it as they wanted nothing to do with me. My boyfriend from 5th & 6th grade moved away. He was the last boyfriend I really had until my husband and I started going out in my senior year of high school. I had plenty of crushes. So, throughout Jr. High and high school, I had a few friends.

 My friend and I ready to go Trick-or-Treating in grade school. 1991.

Hanging out with my boyfriend from 5th grade. 1991.

At Great America the day after prom with a girlfriend of mine my senior year of high school. My husband, then boyfriend, took this photo. 1999

Were there any other kids similarly disabled in school? Were you friends with them?
Yes, not as severe. And yes.

Did you have any best friends in school?

You’ve said you are “spastic”. Was that inconvenient in school at all?
Not anymore than the rest of the time.

Evelyn (11) asks: “How did you open your locker?”
My aide opened it for me.

How about school socials and things. Did you go to dances and other things like that?
Yes, in grade school I went to sock-hops. In Jr. High they had dances right after school. Before I got my best friend in 8th grade, I'd go to these dances and hang out alone then go out and wait for my mom to pick me up after she got off work. 

I had an absolutely wonderful aide in 8th grade who caught on to what was really happening at these dances as I didn't tell anyone. Mom didn't know. I'd always say that I had so much fun. I was good at hiding my real emotions. Anyway, my aide started going to the dances with me so I wouldn't be alone. Then my best friend went with me to dances. Prom is the only dance I went to in high school my senior year with my husband, then boyfriend.

Ready for the 6th grade sock-hop. 1992

With my date for the 6th grade sock-hop. 1992

Prom night! 1999

Did you graduate High School with the rest of your class?
Yes, after much fighting with them (see above), I graduated with honors with my class. I got a standing ovation from the crowd that night. I really don't know why they didn't want me to graduate with my class as my GPA was 3.5.

Getting my high school diploma. June 10, 1999. 

“Back to School: Beyond HS”
College & Grad School

When and where did you enter college? Did you go right after HS? Did you choose a school close to home or across the country?

I started at Waubonsee Community College, located a few miles from where I lived, the fall after I graduated high school. We found an aide to stay with me all day while my mom went to work. She went to school with me and helped me. When she quit a few years later, we couldn't find another reliable aide so my husband, then fiancé took over.

Did you live at home or at the dorm?
I lived at home until I got married.

Did you know right away what you wanted to be?
Oh yes! I'll never forget the night my mom took me to register for my first semester of college at Waubonsee. After registering for English 101 and Math, I could only take one more class since doing homework took me longer. I was strong-willed and took Psychology my first semester of college instead of the computer class I was supposed to take because I can type with my nose. 

Thankfully, my mom, and future hubby supported me. It was so obvious my heart was with young children as it had always been since I was a young child myself. You see, ever since I was a child, I have had a deep love for young children. They, especially infants and toddlers, have always fascinated me. Being severely physically disabled, I would sit in my wheelchair or lie on the floor and observe and interact with infants whenever they were around. I still do. I have been given a gift by God to be able to see children as the beautiful, unique people that they are.

In fact, my first persuasive research paper for my English 101 class was on corporal punishment and why children shouldn't be spanked/hit. Even in my budding knowledge of child development and the Bible, I knew spanking/hitting children was wrong and did not line up with the Bible as a whole.

With my nephew. 1992

How did you get to all your classes and navigate the classrooms once in them?
Same as always. My aide or husband drove me to school. I or they drove my wheelchair or pushed me in my wheelchair to class. They made a spot for me in the classroom.

How did you do your homework?
I did homework by typing all of my papers, projects, and presentations on my laptop with my nose. If it was something that needed to be filled out, then I dictated the answers to my husband.

Writing a paper in 2007

How did your classmates treat you in college?
Wonderfully. I had tons of friends.





A friend's baptism in 2009

When did you decide to go for your Master’s?
I knew I would go to grad school. I graduated from Waubonsee in 2004 and transferred to Southern Illinois University-Carbondale in 2005. I graduated with my Bachelor's a Degree in August of 2008. I worked as an infant teacher at SIUC’s Child Development Laboratories until the fall of 2009 when I started the early childhood Master's program at SIUC.

Tell us how much you enjoyed doing your Master’s Thesis. ;)

Typing with my nose, it takes me about an hour to type one page of text. 

That meant that I never had the luxury of procrastination. I think I was usually the first of my classmates to finish assignments. Thanks to those habits, I was able to complete my thesis in just six months even with the book editing I had to do for my publisher. 

My dear husband deserves so much credit as he cared for me 24/7. 

He helped me physically when I needed it and kept me from quitting. When writing a thesis, every time you think you’ve got it right, more changes must be made. I felt like that thesis would never be done. I am eternally grateful for my advisor and my faith in God, the two things that saw me through this journey.

With my thesis committee after they told me I had PASSED my defense on October 25, 2013. 

Did you have any professors who really inspired you?

I am grateful that the professors in the Early Childhood program were able to look through my cerebral palsy to see the “real me.”

Do you think you’ll ever go back for your Doctorate?
If God wants me to. My husband (jokingly) says he will divorce me if I go back for my Doctorate. The thesis was so much work. I was very stressed out. A Doctorate is even more intense. Right now, I'm enjoying being out of school and trying to get my career going.

How long did it take you to answer all these questions?
Six hours in toto.

"I can do all things through Christ who strengthens me."
Phil. 4:13

1 comment:

  1. are so amazing to me! The sheer persevere you have is astounding and God's hand guiding your heart. Why on earth did they not want you to graduate high school?! That part made me angry and so sad for these people's ignorance. I know my girls are smart and can see their learning in ALL the things we do....much of it can't be measured on any test....their view of the world is just different and unjaded because of the decision we've made to educate them without walls and a list of "what makes an 8yo smart"....they still have an innocence I see absent in a lot of girls by their ages....we don't test in how we learn (it doesn't make much sense outside of a school) we have no need for "passing" or "comparison" when we are led by their enjoy learning when they don't have to fit a "mold"(my girls Def didn't fit the mold and my oldest "passed" 3rd grade when I KNEW, according to the work I'd seen , and her grades, she'd mastered almost NOTHING during that year! She was slipping through the cracks...we were coerced in to medicating her (which made her depressed and broke my heart) it's like once they've been "labeled" as something (adhd, spd, or whatever) the teacher doesn't have the resources to try any other learning styles to HELP THEM....they were certainly more interested getting her to "fit in" to their mold....she needed an iep, but the lengths you have to go to to get one, after an ADHD Dx, is nearly impossible. She was learning so much more at home anyway because her struggles were obvious to me....I honestly feel sad for many teachers who want to do better with such a scenario but they have 20+ other kiddos to teach as well and their hands are tied if the student "passes" second dd doesn't have the same struggles in brick and mortar settings but even she BARELY passed 1st grade! THAT was ludicrous....anyway, YOUR intelligence was SHOWN and MEASURED! Why on earth would they try to stop your graduation?!....I'm happy to call you friend and loved reading were probably the light to many people when they could see your inspire me to go for things I otherwise wouldn't....thank you!♡♡


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