***Jennifer will be working with the Cerebral Palsy Guidance team on public outreach and blogging. It is our pleasure to welcome her on board, and introduce this amazing woman to our readers!***
I was born two and a half months premature, diagnosed with spastic quadriplegic cerebral palsy, in 1983. My parents were told by the doctors that I would not survive through the night. However, doctors do not know everything… 😉
I am now 36 years old, living independently, and married to a wonderful man. I graduated in 2012 with an Associate’s Degree in Paralegal Technology. I pay regular utility bills such as rent, electricity, and an internet bill, just as any other independent adult normally would. I have a Netflix and Disney+ account in my name. I have interests and hobbies such as art, advocating for others with disabilities, researching United States law, and I love watching anything on Netflix involving legal dramas or crime documentaries. (I am a big nerd!) I have opinions about government and politics. Most of all, I love to read my Bible! I am so much more than my cerebral palsy diagnosis!
Here are some things that I do not like about my CP:
Needing assistance going to the bathroom ALL. THE. TIME. – I cannot walk at all due to my cerebral palsy. Whenever I feel the need to “go”, someone always has to be there to help me go to the bathroom. Usually my husband or my CNA.
My spasticity makes it hard to move. – My cerebral palsy causes my muscles to be spastic, which in turn makes it more challenging for me to do simple tasks on my own, like typing on a laptop keyboard, brushing my hair on my own, or even driving my power chair in the winter. My body locks up, making it extremely hard to function some days.
Always having to rely on others for help. – Because of my inability to walk, or stand, I always need help from others who are physically able. If I’m alone by myself without my husband in the grocery store shopping, I usually will have to ask a random Shopper passing by, if they can help grab an item that is on one of the higher shelves for me. Usually, a random Shopper is happy to help. I AM usually the one that is nervous! But I learned to accept that it comes with the territory and to not be embarrassed, because everybody needs help.
Growing up with CP
When I was a child, I always remember that my mother treated me just like any other child. She knew that since I had physical limitations, she wanted me to be tough, and she wanted me to have a strong mindset. That I could do anything any other child could do, just differently. I also grew up with an older brother. He never treated me any differently from a normal, typical sibling that could physically walk. My older brother and I used to watch wrestling growing up in the 80s. He and I would play “wrestling”, where he would set the living room up, and put me down on the living room floor. He would pick me up, and bodyslam me, imitating the moves that we just watched on the TV! I loved every minute of it!
Physically, I remember when I was little, that my spasticity did not affect me as much as it does now in adulthood. However, this is NOT going to be the typical experience for every child diagnosed with cerebral palsy going into adulthood. Just as every individual on the planet is different, so is every cerebral palsy diagnosis!
I attended a special needs school. I remember that a lot of the students that went to my school were in wheelchairs, just like I was. The Special Needs school where I attended, also incorporated Physical Therapy, Occupational Therapy, as well as Speech Therapy, into each student’s school day. The physical and occupational therapy helped me a lot because I was able to get out of my chair for a couple of hours a day and have physical activity. It also helped me to improve my muscle tone and spasticity. I think my favorite part of the school day was going to therapy because I got to get out of the classroom for an hour or two! 😉
In high school, instead of staying in one special needs classroom all day, I was now mainstreamed into a regular, Public High School. I was excited, anxious, and a little bit scared. Now I was able to go from different classes throughout the day and have six classroom periods. The school was able to accommodate my physical limitations and provided me with accommodations with my own personal aide, as well as writing accommodations. Throughout the school day, my personal aide would assist me going from class to class, use the bathroom when needed, and also assisted me with certain handwriting assignments. I really started making friends fast in high school, because all of my classmates were curious about my disability, and they wanted to push me in my manual chair, whenever I did not bring my power chair to school!
Outlook on life and advice for parents
People always ask me if I wish I could walk, instead of being in a wheelchair. When I think about this question it makes me laugh a little. Walking would be amazing! I would not even know how I would react to a miracle like that! However, the answer I always give somebody who asks this question is this: my wheels are my legs! To me, my life is normal. My wheels are all that I’ve known, ever since I was very little.
My advice to new parents of children with cerebral palsy: Sometimes it is best to take negative comments about certain conditions or disabilities with a “grain of salt.” Only you know your child’s capabilities. Fight for them. Let them know that they can do anything that they set their mind to – they may just have to do it a little bit differently, and that is okay. If we were all meant to do things the exact same way, it would get boring! Be patient with them. Be their advocate. Also, teach them how to advocate for themselves. Have them practice those advocacy skills. Most of all, do not underestimate their intelligence or capabilities. No matter what form of cerebral palsy they are diagnosed with.
A few of the things I LOVE about my cerebral palsy diagnosis:
- I get to do things differently.
- I get to advocate and support other individuals with cerebral palsy, and other disabilities.
- I met my husband at a disability advocacy conference.