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 2nd grade all the way to high school
- When I was in 5th
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 1st grade. I had ankle
braces from the time I started walking until 6th grade. My mom had a
special stroller for me until about 4th 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
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