Hi everyone! My name is Jack and I am 1 of 17 million people in the world that has Cerebral Palsy!
I bet when you hear that, a lot of you are like my mom was the first time she heard that I had CP. She immediately thought of someone she knew that had an extreme form of CP and was devastated. I’m here today to tell you that Cerebral Palsy comes in many forms! To avoid going too in-depth, if you’re interested in learning more, check out: https://www.cerebralpalsyguide.com/cerebral-palsy/types/
I have what’s called Spastic Diplegia Cerebral Palsy. It took a long time and many doctors to find out what made me so special because the type of CP I have, isn’t found on an MRI like most. I’ve come to hate doctors, and especially needles, but mom says one day I’ll appreciate all the work they’ve done for me.
To put it in basic terms, the muscles in my legs are chronically tight and stiff and I experience some delays in gross and fine motor skills. My mom and dad first noticed something special about me when I would walk on my tippy toes all the time - it’s very common amongst toddlers but I didn’t grow out of it and as a result, I wore AFO’s (braces) to help me walk. My doc says I don’t need to wear them now which I’m super excited about but they were pretty cool! I’ve had airplane ones, camo and even Minecraft! I may have to wear them again, but for now I’m enjoying buying cool sneakers!
Because of my Cerebral Palsy, I also have what’s called Dysarthria. Like my leg muscles, the muscles that help me talk are weakened. I try very hard to pronounce and articulate my words but it doesn’t come naturally to me so sometimes I forget and you may not understand me well. Don’t be afraid to ask me to repeat myself because often I get excited and comfortable about what I’m talking about and forget to breathe properly or talk loudly; especially in the afternoon when I’ve spent most of the day consciously making an effort to walk and talk! That’s why you may sometimes see me using an iPad or iPhone to help me communicate so please have patience with me if I have to type out what I’m trying to say!
I sometimes get frustrated when people don’t understand me but mom and dad keep reassuring me that I’m doing a great job and that everyone is unique and special in their own way. I won’t be the fastest or most articulate but I’m smart, compassionate, empathetic to my own detriment, a great friend and people tell me my smile can light up the darkest room. My mom tells me that I make the world a better place everyday just by being me - I know she has to say that but I like to believe her!
So what else does CP mean for me? Well, I definitely can’t run as fast as others my age and things like putting on shoes and doing up buttons is a little tricky.
Cerebral Palsy is something I will have for the rest of my life. There is no cure but thankfully, it’s not a progressive disease; essentially the damage is done but I will face some challenging treatments. Botox injections and surgery will help alleviate the spasticity and there may be pain associated with the tightness. It’s hard to say for sure because it all depends on how I grow. Whether I’m short or tall, have growth spurts, etc. will all play a roll in determining what treatments will help me. There are some other common challenges for people with CP, but nothing extraordinary.
My point in letting you know this, is to bring awareness to people with Cerebral Palsy and special needs in general. I may walk, talk or do things differently than you but I CAN do anything you can do - I just may do it differently!
Mom and Dad would like the adults reading this to have a talk with the kids in their lives (and even other adults) about peoples differences and how we should be compassionate, kind and accepting of everyone! They worry about me now that I’m in school because there are bullies and not-so-nice people and they can’t be by my side at all times to protect me. They know people are going to say mean things to me at some point but they’re teaching me how to handle it and react to it because that’s going to make a difference!! I definitely don’t mind answering any questions you may have about my challenges and abilities, so don’t be afraid to ask! I’d rather you ask than be ignorant and point at me.
October 6 is World Cerebral Palsy Day. Please put on your fave green shirt and join my family and I in bringing awareness to the 17 million people, like me, who live with CP!!