Cerebral Palsy. ls Not. "Who" larn. Erin Butler

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1 Cerebral Palsy ls Not "Who" larn Erin Butler

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3 This book is dedicated to all of the therapists and teachere who helped and encouraged me for the past seventeen years

4 My name is Erin. I am a junior in high school who enjoys going out with friends to the mall, football games and the movies. When I was younger I took ballet lessons. Now my favorite activities are dancing and swimming. I also enjoy volunteering at the Children's Library. After watching my three brothers play soccer I became a soccer fan. I am a huge fan of the U.S Women's Soccer Team and have gone to a few World Cup Games. I also enjoy photography and take pictures with my 35mm and digital cameras and have won several awards. My future plans include working as a photographer for a newspaper or magazine, having a photo studio or working in a library. I plan on continuing my education after high school.

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6 lf you walked into a roomful of kids my age you would not be able to pick me out until I moved or talked. I have cerebral palsy. I have a hard time walking and keeping my balance. lf you don't know me well or spend time with me you may have a hard time understanding my speech. Does someone you know wear braces on their legs or use a walker or a wheelchair to get around? The chances are that the person you know has cerebral palsy, better known as CP.

7 a _ Because Cerebral Palsy is not a disease or an illness, you cannot catch cerebral palsy from another person. A person with cerebral palsy was born with it or they got it shortly after they were born. Cerebral palsy is caused by an injury to the baby's brain before it was born or shortly after it was born. Sometimes it is caused by a lack of oxygen to the brain or because of an illness or infection or because a baby is born too early. When a baby is born too early it is called premature. Sometimes the cause of cerebral palsy is never known. However, cerebral palsy is not a condition that gets worse over time. A person can actually improve with therapy, especially if they start very young.

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9 Frontal Lsbe of Cerebrum Lateral View of the Brain Farietal Lobe of Cerebrum 0ccipital Lobe sf Cerebrum Cerebellum

10 Children with cp have damage to the cerebellum, the part of the brain that affects movement and muscle tone. Muscle tone keeps our bodies in a certain position. Being able to change our muscle tone helps us to change our position. some people with cp have muscle tone that is too tight. They have very stiff and jerky movements and have a hard time moving from one position to another. They may even have a hard time letting go of something in their hand. other children have low muscle tone and poor coordination and balance. They may be unsteady and sometimeshaky. Children with low muscle tone have a very hard time doing anything with their hands like writing or picking things up. other people can have a mixture of too tight and too loose

11 muscle tone. These children are not able to hold themselves up to sit or stand and they are not able to control the movement in their arms, hands and face. They have to concentrate very hard to do something as simple as scratching their nose or closing their eyes. Some people have CP that affects both their arms and legs. Others have CP only on one side of their body. Some may have it only in their arms or their legs. 4,u/*:A,t Many people with CP have difficulty talking and swallowing. lt takes a great deal of coordination of the muscles in the face, tongue and throato talk, chew and swallow.

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13 Some children with CP may need extra help with school. They may have Special Education Services because they need to have adaptations made because of their physicaf disabilities. An adaptation rs a change a living thing goes through so if fits better with its environment. Some adaptations might be that a child will have their notes copied for them, or have a person to write their answers down for them or they might need to use a computer instead of a pencil. Some children with CP may have a hard time learning in some subjects but be very good at others. Many children with CP have therapists who work with them. Physical therapists help children learn better ways to move their bodies and balance themselves. They may even help a child learn to walk or use a wheelchair. Occupational therapists help children find ways to move their upper body like arms and hands. They also help some children find equipment that they might be able to use to make everyday tasks easier. 10

14 Speech therapists help children with CP learn communication skills. They can help a child speak clearer. They also may help a child who cannotalk at all to learn sign language or use a communication aid. One kind of communication aid is a communication board that has pictures or words on it that a child can point to in order to let people know what they need or what they are thinking. Speech therapists also help children use computers that have voice synthesizers. When a child cannotalk voice synthesizerspeak the words that the child types on the computer. All of these therapists help a person with CP adapt to their environment so that they can be as independent as possible. As a result children with CP are able to participate in family, school and community activities. l1

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16 Just as each person is different and there are no two people exactly alike, there are no two people with CP who are alike. CP affects everyone differently. Some people with CP may be just a little clumsy and others may not be able to move their whole body or talk or eat on their own. When I was seventeen months old the doctors told my parents that I had CP and that I would never walk or talk or be able to go to school. With the help of many therapists and my family I was able to do all of those things. lt took a lot of work, but I did it. When you meet a person with CP remember how much work it takes for them to do some of the simplesthings. Please don't feel sorry for them or try to do things for them unless they ask for help. People with CP work very hard to be independent. Always ask a person if he or she wants help. 13

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18 People with disabilities often are made fun of and stared at. Some people are afraid to be with a person with a disability because they are afraid they will be made fun of too. This used to really hurt and upset me. Now that I am older it still hurts, but I understand that people have a hard time with anyone or anything that is different. Sometimes I know people feel uncomfortable when they hear my speech and see me walk. They laugh or walk away from me. Some people also think that because I talk differently I must be stupid. lf you meet a person who has a difficult time with speech don't be afraid to listen and ask them to repeat what they said. Don't be embarrassed. I would ratherepeat myself and know that a person is truly interested what I have to say. When I think of myself I see a "normal" teenage girl who happens to have CP. This means there are some things I need to do differently but I can do them! 15

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20 This book was written during my junior year of high school as part of my senior project, a requirement for graduation from high school in Pennsylvania. I wanted to help school aged children understand cerebral palsy. I graduated from high school in 2005 with a regular diploma and was awarded a certificate of proficiency in mathematics by the state of Pennsylvania. After graduation I decided to take a break from school and volunteered at United Neighborhood Centers in Scranton, Pa. I worked in "Angels Attic" providing food and clothing to people in need. I moved to the Huntsville area at the end of 2007 with my parents and the youngest of my three brother. I have been doing volunteer work with children in my church and at UCP. I continue to enjoy photography and meeting new people.