I'm a child with cerebral palsy
They used to say "childhood cerebral palsy". However, with age, the diagnosis does not disappear, and adults do not want to be told that they are suffering from something "childhood". That is why now the word "childhood" is considered needless. They just say "cerebral palsy".
My movements are not the whole of me. Not even so. I am much, much more than how I behave. Of course, these movements draw attention to themselves, but inside me is a huge world, just like any other child has. My thoughts, character, feelings. I am a personality. This is much more important and interesting than how muscles behave. I hope that you understand this. And then it will be easier for you to get used to the fact that I am different, and we can become real friends.
I have cerebral palsy since birth. And I can live with it.
For some reason, there was brain damage, long long time ago. Unfortunately, doctors are still unable to establish the exact cause of my cerebral palsy. But in general, there are a million possibilities for why this happened. For example, my mother was sick during pregnancy, or I was born prematurely, or my brain did not receive enough oxygen while I was in my mother's belly. It is clear that genetics has nothing to do with it. I have cerebral palsy since birth. It will always be with me. And yes, I can live with it.
My brain controls my muscles worse than yours control your muscles.
Because of the damage, my brain sends wrong signals to my muscles. What you see (my movements) is the result of muscle work. I want you to know, that my muscles are fine! But the brain is often wrong when it tells them how to move. It doesn't know how to manage them as well as yours does this. What does it look like?
We have the same diagnosis, but we are all different. There are many forms of cerebral palsy. Some of us have barely noticeable peculiarities of movements, other people with cerebral palsy have very poor muscle control and find it difficult to sit and hold their heads, and some people unintentionally move their arms, legs and facial muscles.
The cerebral palsy affects movements, so my movements and speech cannot be used to understand how smart and capable I am.
It takes time and care to understand me, to recognize my abilities and talents. The more we communicate, the better I will speak and the better you will understand me. It's easier for me to start communicating with you together with my parents, because they understand my speech and movements well and can establish our interaction. I can also use PECS cards or gadgets for communication, so I can express thoughts and ideas faster.
Yes, I have a complicated diagnosis, but I have two pieces of good news:
First one. The cerebral palsy is not progressing. My brain damage will not get bigger over time. However, my health and development will always need to be taken care of so that one diagnosis does not lead to other problems. Doctors call them secondary complications. These include: poor posture, scoliosis, contractures, reduced joint mobility, and so on. This is important for my development. Knowing my condition, the specialists who help me can select a development program and predict the result.
Second one. I can learn different moves. It's a trick of my brain. If some cells stop performing their task, others can replace them. Adults call this brain trait neuroplasticity. However, it is not easy to shake them, and they cannot be simply forced. Previously, doctors tried to force children to perform various movements through pain to get their brains used to it. When scientists invented CT and MRI, they saw that these methods were ineffective and sometimes really harmful. Now doctors are trying to motivate the brain to build these connections, to make me want to reach for something, take something, walk.
My desire to learn, play and communicate inspires me to move. When I want something, many superpowers are activated in my brain: to play, move, see, hear, and be happy. When I'm in the mood and want to be good at it, I like to repeat the movements, and I develop a stable skill. This means that this will be easier and easier for me with time. Then I don't notice any pain. And I don't need to be asked to do anything. I just like to move, and I do it every day, just like other kids.
My movements look different, but I can do it!
My movements will not be as beautiful, smooth, and "correct," but I can do what I want, enjoy my successes, and live a full life! Moreover, this is the most important thing.
I use a wheelchair.
I also have friends who use walkers and other special devices. It's not because parents or specialists didn't work with me and them. This equipment gives us the opportunity to be mobile and independent. If you see that I need help, first ask if I need to be helped. And do it only if I agree. Believe me, I can and want to do a lot on my own.
I am very similar to my peers.
I am very similar to my peers. I live with my mom and dad. I have my own room and, of course, a shelf with transformers. I love playing and walking. I also like to read books, sometimes with my parents. I like ice cream and watching movies and cartoons. I like to play real and computer games together with the boys. I also like to visit my friends. But it's a whole other thing. My wheelchair doesn't fit in the elevator, and, for example, it's hard to get to the fifth floor without it. You must admit that this is unfair, because, there are ways for you to get to the fifth floor (by stairs or elevator). No one would even think of suggesting that you overcome yourself and climb a rope! I also want to be able to visit friends easily whenever I want. To do this, I need a ramp and a slightly wider elevator door. In the meantime, we are solving problems as best as we can: playing online, talking on the phone, ask our parents to buy walkie-talkies! We have a lot of fun when we are together.
It's great when we are different and we are friends.
Sometimes it's very difficult for me to make a move - even ordinary walks in the city. It is very important for me to be thought of in advance, so that the place where I will be walking is equipped. For example, when I ride in a wheelchair, I need ramps and elevators and I don't need white and beautiful curbs! When I go to kindergarten or school, I will need a comfortable place. When I ride in public transportation, I will need a slight lift or a special mechanism. All this helps me to be more independent, useful and happy.
