Experience Journal: Growing up with cerebral palsy

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Cerebral palsy (CP) is the most common physical disability of childhood. The term CP is an umbrella term for a group of disorders that affect body movement and posture as a result of damage to a baby’s developing brain. There are many causes for CP, but all occur either during pregnancy, birth or shortly after birth. Common causes include differences in brain development, infection or stroke. Oxygen deprivation is accountable for only a small percentage of cases of CP; often, the cause is unknown. Although CP is a lifelong condition that can’t be reversed, children with the diagnosis can lead rich, fulfilling lives with the right medical and surgical management.

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The Cerebral Palsy Experience Journal, created by the Boston Children’s Hospital Department of Psychiatry and the Cerebral Palsy Program,  represents the collective wisdom of patients and families living with Cerebral Palsy.

Children, adolescents, young adults and parents were interviewed about their experiences with cerebral palsy from dealing with others’ questions to coping with physical and emotional challenges. Read their stories in their own words.

Dealing with others’ reactions

Molly, sister, 11

If they say, “What’s wrong with her,” we’ll say, “Sarah, is something wrong?” And then we’ll say, “She looks fine to us. Thanks for your concern, though.” They get the hint.

Stephanie, 14

Cerebral palsy has affected the way people treat me. Kids at school who don’t know me won’t talk to me, or they might give me looks. I remember on the first day of school one year, a friend and I had to stand to the side at gym while everyone else played because of our disabilities. What made me upset was that the teacher didn’t even glance at us. The way people treat me gets me upset sometimes, but I have to remember that people are just noticing that I am different. I try to introduce myself to new people because it lets them know I am a nice person. Once people understand they don’t have to be afraid, they are friendly.

Robert, 21

I get asked by a lot of people, “Do you ever think negatively?” I think everybody thinks negatively now and then, but I never really get caught up in it. You need to appreciate what you have, when you have it and how you have it — because things could be a whole lot better, but they could also be a whole lot worse.

Coping with challenges

Stephanie, 14

Personally, I think the most difficult thing about having CP is being accepted; learning how to accept yourself and accepting others. I don’t think the pain of surgery is as bad as not being able to accept the life you are given.

David, 18

The most rewarding thing is to be able to set challenges and surpass them. … My greatest accomplishment was being awarded a full college scholarship.

Emily, 18

It’s hard having cerebral palsy sometimes because I get spasms, and my arms and my legs get really tense. My mind wants to do something, and my body wants to do something completely different, and I hit myself sometimes, like involuntarily I hit myself. Sometimes it’s really hard, especially because I love dancing. I’ll listen to music that I really like and want to dance to, and I’ll want to get up and dance, but I can’t really.

A father

If you have a kid with some type of illness, you always chalk everything up to the illness and it may not be that way. She could be in a very foul mood because she’s 15, and that’s the way teens are, and it’s not because she’s in pain or has a brewing ear infection.

Advice for other kids and parents

A mother

Try to talk to other parents that have similar issues. It’s very lonely and emotionally draining if you try to do this alone without community support. There’s so much information out there … but when you get together with a group of parents, you can pull it together.

Stephanie, 14

I understand how you feel — you wish you were different. If people are shy, try to introduce yourself, and make conversation. This way they will have no reason to be afraid. It can be frustrating when you can’t do certain things. Try adapting things to make them easier for you. Always focus on what you can do, not what you can’t. Try not to worry about what other people think. It can be hard to be accepted. Focus on the positive! Even though it may feel like it sometimes, you are not alone. Try your best to be social and make friends. Always try your best in therapies, too. It can be hard, but trust me, it’ll pay off in the end.

Ruby, 15

If you meet a person with cerebral palsy, please don’t talk down to them. It drives them nuts. Every person with cerebral palsy that I’ve met, even if they’re deaf or something’s wrong with their hearing and speech, they just know when people talk down to them, and they ignore them.

Learn more about the Cerebral Palsy Program.