What's Wrong With You?
My Life with Cerebral Palsy
Hi, my name is Abby. People ask me all the time what is wrong with me. Sometimes people just point or stare or whisper too. That hurts my feelings. I get so tired of people asking me so I want to tell everyone at once.
I am not sick. I have Cerebral Palsy and it is not contagious . You cannot catch Cerebral Palsy. I was born this way much like someone can be born blind or deaf .
I hope you learn about Cerebral Palsy, why some people have trouble doing things you can do easily and how to be helpful and not hurtful.
Around the time I was born, something happened to my brain. I was very sick and rode in a helicopter to a hospital that could take a very sick baby. I spent a week in the NICU or Neonatal intensive Care Unit . I couldn't breathe on my own and had to have a tube in my throat so a machine could breathe for me. My brain was injured because of something called a stroke. A stroke can happen when there is bleeding in the brain which is called a cerebral hemorrhage or when blood flow to the brain is stopped. We don't know what kind I had, just that the MRI showed damage on the left side of my brain. Many people don't know this, but the left side of your brain controls the right side of your body and the right half of your brain controlls the left side of your body.
The brain has three parts; the cerebrum , the cerebellum and the brain stem . This story is only about the biggest part, the cerebrum. The two halves of your cerebrum are called hemispheres. My stroke happened in the left hemisphere and affects the right side of my body. The brain is divided into different lobes. Each lobe controls a certain part of the body.
The brain has many different jobs. Each of these jobs is done in a certain place. Doctors and scientists give the brain parts names called lobes. These lobes are not really divided like pictures show. Pictures use lines and colors to help people understand what area is being discussed. There are four main lobes of the brain; the occipital , the parietal , the frontal and the temporal . My stroke happened right in the middle of the brain where the temporal,frontal and parietal lobes meet. The animated brain on this YouTube video shows the different parts of the brain.
When the brain is hurt, sometimes it becomes harder to do things. The picture above shows some of the things that can be affected with an injury to different areas. The injury to my brain affects me in many ways. The thing most people notice right away is that the muscles on the right side of my body do not work well. The type of Cerebral Palsy that I have is right spastic hemiplegia . This means that the muscles on the right side of my body are very tight, like when you get a muscle cramp, but all the time.
My arm is much worse than my leg. The muscles are so tight in my arm that my wrist is pulled down and my elbow pulls in. I cannot move my fingers or wrist and do not feel much when they are touched. My leg is very weak, but the muscles pull my foot down, which causes me to trip and fall a lot. I wear a special brace called and AFO on my foot to hold my foot up. The picture above shows my braces. The teal one I wear only during the day on my wrist to help me use my hand. I only wear the big white one with butterflies at night. It helps stretch my arm muscles and I hate wearing it.
Other muscles are affected too. I have trouble talking, chewing, swallowing and even brushing my teeth because my tongue does not cooperate. I have a gel to mix into drinks to make them thicker and easier to swallow and use a straw to help keep liquids moving, making them easier to swallow. I have to have extra time to eat so that I won’t choke on my food. Because I don’t feel things as well on my right side, sometimes I don’t know when I have food on my face while eating and that can be embarrassing. Sometimes, especially when I’m really exciting, I drool a little too, all because my muscles don’t work quite right. The brain sends messages to the muscles and tells them what to do. With my brain, the muscles don’t always get the message.
What else should you know about Cerebral Palsy? Sometimes, I can run and play just like you. Sometimes it is so tiring and I have to rest a lot. I cannot walk for long, so going places like the mall, museum, zoo or any place that requires a lot of walking is very hard. On days when my muscles are really hurting, walking is very difficult. I have a handicap tag so on bad days my mom and dad can park a little closer in special handicapped parking spots . I used a stroller until last year and am now too big, so I am getting a new wheelchair. I am so excited because now I can go anywhere and enjoy my day without hurting. It is hard when people see me get in and out of a wheelchair . Most people think that if a person uses a wheelchair then they cannot walk. This is not always true. Sometimes people use a wheelchair to walk longer distances, but can walk short distances. Please don’t judge or think someone is faking their disability . People also stare and make comments when we use a handicap spot. I can tell they think we don’t need it, but my parents know that I do.
There are many things I cannot do that other people can. I cannot tie my shoes, yet. I cannot button pants or shirts and have a very hard time zipping. It is hard to brush my hair and teeth, but if I have enough time, I can do it. I still need help getting dressed and undressed, especially if my clothes are a little tight. If you want to know what it is like, try to change your clothes, take a bath or wash your hair with only one arm. How about eating, opening packages at lunch, or cutting your meat with just one hand. I come up with my own ways to do many things, but need help with many others. It’s okay to ask me if I need help if you see me struggling, but please don’t think I don’t understand you. My mom has been showing me videos on the internet to help me learn to do skills one-handed. I love YouTube videos especially from another girl with Cerebral Palsy because she shows how she has learned to do things differently from others so that she doesn’t have to always have people help her.
At school, gym class is the hardest. I cannot jump rope on my own, but if two people swing the rope slowly then I can jump rope. I cannot do push- ups or even hang from the monkey bars, but I can do supergirl stretches instead. My therapists help me think of ways to do something that is almost the same as what my classmates are doing. It is hard for me to play most games because I fall so much and I often get hit with flying balls because I can’t move out of the way fast enough. I want to be a part of everything and try to find a way to participate. I also have trouble getting my binder in and out of my backpack, opening my binder, cutting out paper pieces, carrying my lunch tray and going up and down the stairs. I have to hold on to the rails with my left hand which means I am always going the wrong direction! Now I go with a teacher to make sure I don’t fall or get run over by someone coming down the stairs quickly.
I have to do a lot of therapy. I go to Occupational Therapy and Physical Therapy . Last year I finished all my goals in Speech Therapy so I don’t have to go anymore. I have many doctors that I have to visit, too. My Neurologist watches how my Cerebral Palsy is affecting me and also gives me medicine for seizures . Seizures are very common in people with Cerebral Palsy. My seizures are very rare now, thanks to my medicine. Sometimes, though, it might seem like I am daydreaming, but my brain just isn’t working quite right for a few seconds. It has been over a year since I have had one of the scary seizures. They scare me, and my mom. I also have something called ADHD . ADHD is also common in people with Cerebral Palsy and makes it hard for me to pay attention and learn. I have had a lot of trouble learning to read and spelling is very hard. I get a little extra help each week to help me remember what I am learning and to keep practicing. Sometimes I get very frustrated because my school work can be so hard.
Most of all, I want everyone to know that I am a person. I am more like you than different from you. I don’t want to be treated any different. If there is something I really need help with, then please help, but please never think that there is something wrong with me. Accept me. Be my friend. Don’t use those horrible words like “retard”, “dummy”, “cripple” or even “handicapped”. I am different, but so is everyone. Everyone is different with their own strengths, weaknesses, hopes and dreams. One thing I want to do more than anything is to ride a bike. I got to try out a bike at therapy one day that is made for kids like me. It was so much fun! I want one so much, but they are very expensive. A girl can dream, though. What are your dreams?
I hope you enjoyed my story. As you can see, Im just like you in most ways and just want to be like everyone else. I hope you have learned about Cerebral Palsy. If you want to learn more, please visit the links below. Remember, a person with a disability is a person who happens to have a disability and they should always be treated as you would want to be treated.
http://www.youtube.com/watch?v=0nnuHj5M5FE
http://www.youtube.com/watch?v=Kzb1XYGO0IQ
http://www.eastersealshouston.org/
http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm
The recommended range for this book is third through fifth grade. It could be used with older children as well as part of a unit on disabilities or in science while studying the brain. This would also be a good resource to help prepare a class to accept and assist a new student with a similiar disability. This book could be used with a student that has a disability in reading as the book can be read aloud by the screen reader to the child. The screen reader function would also assist the visually impaired. The pictures are also narrated to make them accessible to the visually impaired. A digital glossary with definitions and in some cases pictures will help students learn vocabulary.