Monday, September 1, 2014

"Life with Cerebral Palsy" with Stephanie Cox: The Chair!

So, what’s it like being in a wheelchair?
I guess I never really thought about it. I'm very blessed to have family and friends who never focus on me being in a wheelchair. Everyone who truly knows me for me includes me in everything. 

I rarely feel trapped, and when I do feel trapped, it's because I wish I could get up and help someone. So, to answer your question, it's not a big deal being in a wheelchair most of the time because God gave me the ability to live as "normal" as possible of a life with my wonderful husband. And sitting in a wheelchair is just like sitting in a chair.

Me all ready to graduate with my Master's Degree in Early Childhood Education from Southern Illinois University-Carbondale on December 14, 2013 

Have you been in that chair all your life? 
Well, I've been disabled all my life. Many people think I'm confined to my wheelchair all the time. So, when you ask "that chair," it makes me giggle because I got my first wheelchair when I was three or four, so if I had been in that chair my whole life, I'd have broken it. Hahaha. 

And I'm not confined to my wheelchair. I lie on the floor, couch, bed. I can sit on the couch with lots of support. I ride in the passenger seat of our van. In other words, while I am in my wheelchair a lot, I don't live in it, therefore, it is more accurate to say that I have had to use a wheelchair my whole life since I have severe cerebral palsy due to not being able to breathe for roughly 40 minutes when I was born. 

My siblings and friends used to carry me around. They even took me sledding. My husband and I danced our first dance with me in his arms instead of in my wheelchair.

My sister carrying me around as always. 1985

Me in my first wheelchair. 1986 

Me helping my family paint our fence. I got more on me than the fence. 1988 

Our first dance as husband and wife on April 12, 2003

My husband and me in our van. 2011 

Why are you in a wheelchair?
I am in a wheelchair because I have severe cerebral palsy. I cannot walk. Actually, I shouldn’t even be here. By that I mean on this earth. When I was born, I did not breathe for roughly 40 minutes. The chances of an infant surviving this is zero percent. God has a plan for me

Does your butt get sore from sitting all the time?
Sometimes. It depends on what chair I'm in. I have a big blue chair that I only use at home. We call it my "comfy chair." I can move around more in it. It's just right for everything. 

I have a regular wheelchair that I use in public. It isn't as comfortable. Actually, I need a new one as I've had it since high school. The seating is losing its padding. Unfortunately, wheelchairs are extremely expensive. Especially for people like me who require a lot of support to sit. I can't sit by myself at all. I'll fall over. Even in my wheelchairs sometimes I fall over if I am not sitting right or get super excited and spasm. 

Anyway, we can't afford a new wheelchair right now and I don't have insurance that will cover it. So, when I'm in that wheelchair in public, after a while, my butt and hip start to get sore. 

Another thing too is I can't move as much in that chair because we strap my feet in so that I don't accidentally kick people. I am very spastic due to my cerebral palsy. I have a ton of involuntary movements. So, strapping me in more is required when we're out and about.

Me in my comfy chair at home. 2014

Me in the wheelchair I use when we're out and about. 2014 

Can you stand on your own at all?
No, but I can bear weight on my feet. I just have to be held onto or I'd immediately fall. 

I have a stand up chair that is power that I use. I don't use it as much as I'd like because it is a power wheelchair and we don't have a van with a lift anymore. It's way too heavy for my husband to lift up into our van. Again, lifts for vans are very expensive. Someday I hope we'll have a van with a lift again so I can use my stand up wheelchair more. 

For some of my care, my husband must stand me up. I hold onto his neck with one arm and he holds me while he does whatever needs to be done. 

Me "walking" in my stand up wheelchair. 2004 

"Walking" across the stage when I graduated with my Bachelor's Degree in Early Childhood Education from Southern Illinois University-Carbondale on August 2, 2008. 

Did you crawl as a baby?
No. I rolled all over and then I "army crawled" throughout my childhood whenever I was on the floor, but I could never crawl on my hands and knees without a ton of help. 

Rolling and "army crawling" were the only two major physical developmental milestones I achieved as a baby. 

Still, it took the doctors about 18 months to officially diagnose me with cerebral palsy. I was born September 13, 1981.

Do people ever stare at you? How does that make you feel and what do you wish they would do?
Yes, people stare at me. Children do, too. I'm weird but I don't mind children staring at me because they are curious and end up smiling back when I smile. Children are much more accepting of me than adults. Children usually warm up to me very quickly and end up being able to understand my slurred speech quickly too. 

Please don't scold your children for staring. Help them to see that I am like everyone else.

I do not like when adults stare. Adults should be able to see past my disability to me. When adults stare or talk to me like a baby, it makes me feel self-concious. I canNOT stand being talked to like a baby or when adults patronize me. I am just like everybody else. Treat me with respect. 

Last week a lady at the grocery store said hi to me very patronizing. My husband and I got away from her as quickly as possible. I've dealt with this my whole life. Even if we try to tell them that I have my Master's Degree, some people still do not get it that I'm human. I am not mentally retarded. We talk to children and people with mental disabilities like everybody else. I wish all people could treat children and people with disabilities with respect. God sees our hearts, not our physical appearances (1 Samuel 16:7).

Do people ever seem to avoid you? How does that make you feel and what do you wish they would do instead?
I just started noticing that some people do avoid me at my book events. As a teen, that was the way it was because I wasn't "cool" and "like everybody else," so only those who took the time to get to know me hung out with me. This was extremely difficult for me as a teenager. 

I had thought it had gotten better in college and grad school because most were happy to talk with me. But since my book has come out, I've had a number of book signings in my area with only a couple people showing up. 

At first, I thought it was because my book is about gentle, respectful parenting. Corporal punishment is so ingrained in our society, especially Christian society, that it can be very difficult to get people to see that God never intended for children to be spanked/hit. 

But, after a recent book event where some people seemed to go out of their way to avoid me, it became obvious that it is more than just the content of my book. I'm sure there are other reasons why some people don't approach me. I do feel, after being more in the public eye, some are afraid of me or intimidated by me.

How does this make me feel? I'm fighting back tears as I type this. It hurts. It makes me angry. It makes me sick. 

Christians, I feel, should be the most accepting of me. Yet, at a Christian bookstore, Christians seemed to go out of their way to avoid me. But, God is using my disability for His GLORY! I am not being punished. My parents are not being punished. God needs me exactly how I am to do His work for Him which happens to be advocating for children, the least of these. Read John 9 for a better understanding of how God can and does use people with disabilities for His glory.

Please come talk to me. Ask me questions. I love talking with people. I love answering questions. My husband is always with me to help people understand me. Please don't go out of your way to avoid me.


A great book party at my church in March 2014. 

How do you feel when people ask you questions about being disabled?
I welcome it.

Do you wish people would ask you more questions?
Yes as long as at some point we can move on. I love teaching people about cerebral palsy. But, my life does not revolve around cp.

Why is one of your arms bent?
It is? LOL! Sometimes when I'm excited or anxious my arms will bend. But it isn't always bent.

It isn't bent here. 2013 

It isn't bent here. 2006 

Does one arm work better than the other?
Not really. I am right handed, so when my husband helps me sign legal documents with a pen, I use my right hand. And I drive my power wheelchair with my right hand. Overall, both arms and hands are equally affected and not very useful. 

Do you sign books at book signings yourself, then?
No, I can't sign my name with my hand. I sign my books at book signings with a stamp. 

In January 2014, I downloaded a drawing app to my iPad. After several tries, for the first time in my life, I wrote my name with my nose unassisted! My family and I cried tears of joy at this huge accomplishment. 

At book signings, though my speech is very slurred, I dictate what I want my husband to write in each book. Then we stamp the book with my signature.

My signature written with my nose!

Me telling my husband what to write in a copy of my book and stamping my signature at a book signing. 2014

Tori (age 6) asks: "How do you hold your water and spoons and food?"
Oh my. That would be a huge mess. LOL! Because I am very spastic anything in my hand is liable to go flying or hit someone, including myself. My husband feeds me.

My husband feeding me sushi at a restaurant with my mom who took this picture in 2011. I drink out of the water bottle. Yes, I enjoy a beer once in a while. 

Evelyn (age 11) asks: "How do you dress yourself?"
I don't. My husband dresses me.

Our cat YP "helping" my husband dress me after a shower. 2014. 

Elisa (age 8) asks: "Can you pet your cats?"
Yes! I pet them with my hands, sometimes with help, or with my face. We don't ever hit our cats, so they're not afraid of me. They know that if I accidentally bop them while trying to pet them that I don't mean to and they just let me do it.

Me petting YP 2014 

Loving on Patches her first day home. 2007 

Dara (age 39+) asks: "What do you do when your nose itches!!?"
I just rubbed it on the side of my iPad. LOL! Otherwise, my husband scratches it for me. Sometimes I wriggle until he can come scratch it. LOL!

Tori (6) asks, "How do you go potty?"
I have a special toilet chair that fits over the toilet. My husband straps me on it and leaves so I can do my business. Then when I'm finished, I call him and he cleans me up and puts me back wherever I want to be.

Toilet chair. 

Approximately how long did it take you to type your responses to these questions?
3 hours.

by Stephanie G. Cox M.S.Ed.

Creative Commons License
Life With Cerebral Palsy by Dara Stoltzfus and Stephanie G. Cox M.S.Ed. is licensed under a Creative Commons Attribution 4.0 International License.

1 comment:

  1. Thank you so much for sharing yourself with us here Stephanie !!! I am glad that you are here.. and know that God definitely has a plan for you! Never lose heart ..... your wonderful words will help parents to become more gentle towards their children and THAT ... is worth gold and all the riches on earth !! God Bless


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