Little Q and A

A friend of mine is doing a research paper on CP and asked me questions about it. I thought it would be beneficial for all of you to read the answers as well. Give a little insight of what I may not cover in my blog posts! :) 

What classification of CP do you have?

I have mild, spastic CP. It affects my whole body

What difficulties did you have when you were young (socially, physically, emotionally, etc.)?

Well this is a hefty question lol. Let’s start with physically – obviously I could not do the things that other kids could. I couldn’t run as fast as others or play any sports very well. I struggled with fine motor skills so I had to constantly get help or have adaptations.

Emotionally/socially: I was blessed with good friends and I never truly got bullied which is very rare so socially I felt okay. Emotionally, not so much. I struggled a lot with why I was different. I didn’t like not being able to do things that my friends could do. I hated getting stared at in public like I was some alien. I spent nights crying because I just didn’t understand why I had to be different and why there is no cure.

Were you offered different types of treatment? (Therapy, surgery, chiropractor, botox..) Did you participate in any of these?

Several different types of treatment:

- I did occupational and physical therapy 2-3 times a week. When I got into junior high and high school it was more like 1 every 6 months for a check up and that continued until I was 21.

- I did therapeutic horseback riding from 2^nd grade all the way to high school

- When I was in 5^th grade there was a therapy that was developed by Poland astronauts for when astronauts came back to earth how to get acclimated to gravity. Then a therapists decided to try it with people who have physical limitations. It was an intensive therapy but was so good for me and really worked on strength and how I walk.

- I have been taking medication since high school to help with controlling my muscles.

When were you able to start walking? Any assistive devices? What were your challenges with this?

I started walking when I was two and I used a walker until about 1^st grade. I had ankle braces from the time I started walking until 6^th grade. My mom had a special stroller for me until about 4^th grade and then I got a wheelchair. The stroller and wheelchair were to help me with long distances so anytime I went to the mall or an amusement park I would use it because I would get fatigued so easily. I used an Alphasmart when in elementary school because it was easier and faster for me to type my schoolwork than to write it. My hands get easily fatigued and tired when I write. Once I got into high school I used a laptop in all my classes. I used and still use a button hook to help me button the buttons on my shirt because sometimes those buttons are just way too tiny for my wacky hands to button.

What level of independence did the doctors predict for you vs how independent you are have become?

My mom said they actually thought I would be pretty independent due to me having a more mild form of CP but I don’t think they predicted that I would be so independent like having a career or being able to travel abroad independently.

Role of your parents and siblings?

Oh my goodness my parents played a huge role in what I have become. They did a lot of research to get me the best therapies and make sure I would become the best I could be. My brothers were always supportive of me and helped me in the best ways that they could.

Outlook on life when you were a young child vs. now?

Um my perspective on life has definitely changed. I was more negative and I always dreamed on having an independent life as a child but I never really thought it would happen. I look at my life now and I am so blessed. I do not think of having a disability as something that is a negative part of me. I embrace every little challenge involved. I mean lets be real I do have days where I’m like this sucks but those are minimal. I now see my disability as a way to help others and to give them an insight of living differently. I connect more with my students because I can relate to being different than the normal. I think I see my life with a lot more joy and possibilities than I did when I was younger.

What should parents know?

I think parents should know its okay to be scared and nervous. I see it when I look at the parents of my students. You don’t quite know what you are doing and if you are doing the right thing. But I wanna say it is important to do your research, find out all you can, talk to others who have CP and see what has worked for them. Test out different therapies. Most importantly, just love on your child and make sure they feel like they are worthy and being different is beautiful.

What should other children know??

They should know that life is hard with a disability. You are going to face some major obstacles and you are going to be judged so many times that you think it will never end. But dig down deep and find that inner courage to fight down those negative people and to prove that you are a mighty warrior and you are worthy of living your dreams. Also as much as you might hate it you need to go through those therapies and do what they say because it will help you in the long run