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Cherinee's Story

Cherinee
quote from Cherinee

This is a transcript of a video from the Growing Up with Epilepsy Web site. For more information visit http://www2.massgeneral.org/childhoodepilepsy.

Coreta: Is it even? Do you have enough dirt, do you think?

Cherinee: There needs to be some more in the middle.

Coreta: Okay, let's do a little bit more.

Cherinee: My name is Cherinee, and I'm 11 years old. I'm in fifth grade. Epilepsy makes me feel very strange, because I feel very different. I don't like being different.

Cherinee: How do you take it out?

Coreta: Just pull it up like that.

Danny: I think the impact on their self-esteem when they have epilepsy is huge. There is an embarrassment factor.

Cherinee: Seizures are very annoying, because if I was playing with my friends, then I would have them and they'd be talking to me, and they'd think I'm ignoring them. And then that's how I'd lose them.

Coreta: You got it?

Cherinee: Is it even?

Coreta: She was always embarrassed to go out and even at school playing with her friends, 'cause she said, "Mommy, kids laugh at me, because I don't participate like they want me to."

Elizabeth Thiele: Children with epilepsy are very vulnerable to difficulties with self-esteem. They have a disorder that is very unpredictable. They wake up and go to school every morning not knowing if they're going to have a seizure during recess, during gym or during English. Because of those difficulties with self-esteem and self-concept, we thought of the karate program as a way to really help children work on that and improve that.

Cherinee: I wanted to start karate class since Dr. Thiele mentioned it. And now I'm very happy, because I'm with friends that have the same problem I do. This is my second year of karate and last year I got my yellow belt.

Cherinee: Meeting other kids who have seizures and making friends, it makes me feel very happy, because I don't feel lonely no more. Now I know that some people do have seizures like me.

Derrick: Bow, right foot out to elbows.

Children: Hai!

Derrick: To the street.

Students: Hai!

Danny: I think it was important for Cherinee, just because in dealing with epilepsy or dealing with seizures, she can see that "I'm not the only one who has this problem."

Derrick: Very good.

Danny: Just being able to get her into a community of people suffering from the same disease, it was good for us, and we wanted to be a part of that.

Nicole Danforth: Group activity is important for kids with epilepsy, because we want them to feel as normal as every other kid.

Derrick: Switch like Sensei...

Thiele: It doesn't have to be karate. We've just found that karate's very effective, because each child functions on their own within a group. We also think yoga would be very good for children, and we have some children who do succeed and thrive at playing soccer, playing hockey, dance. But for many of the kids, it just proves to be tough and can be a frustrating experience. And so we've found that karate works for most of the kids.

Derrick: Great job. Good.

Danny: If a student in the karate class had a seizure during the session, Derrick has been trained to know how to deal with it now.

Coreta: Now when a child has a seizure in the class, nobody laugh. They stop the karate and they wait until they take her down, put her down for a little while until she's fine. And if that happened somewhere else, people would be laughing. You would feel embarrassed. But in her circle, nobody feel embarrassed. Everybody's supportive.

Danforth: That sense of safety is so rare for the child with epilepsy. If a child could hold onto that feeling for a 45-minute karate class, the idea is, well, maybe they could hold onto this feeling a little bit longer. And the goal is to help the child sort of cope with epilepsy and, you know, the spin is, you know, you are a little bit different and you are a little bit unique, and that doesn't necessarily have to be a terrible thing.

Derrick: She wraps me tight.

Cherinee: Hai!

Derrick: Good-- try it again, real fast this time.

Cherinee: Karate has helped me bec use it shows me discipline and how to control myself at certain times.

Coreta: Because of her seizure and her history, her medical history, she didn't feel that self-confidence. But by doing this karate, she felt empowered that, "You know what? I can do anything else everybody else does."

Instructor: Good, don't be afraid. Keep that kickboard out in front of you, okay?

Cherinee: Well, it makes me feel confident because now I feel like I can do more things like swimming and to play sports and play with my friends outside, and go over to my friends' house and have parties.

Instructor: See if you can keep from touching the ground. Good, keep going.

Cherinee: I feel like I can be myself.

Cherinee: I did it!

Instructor: Good job.

Coreta: I think it's important for kids with epilepsy to have a normal childhood or a normal life, because you don't want them to feel left out.

Instructor: Awesome. Look up at the ceiling.

Danforth: Parents play a large role in a child's self-esteem. And one of the things we try to encourage parents to is to sort of appeal to the healthiest part of your child and don't minimize the unhealthy parts. Don't minimize the effect of seizures. But also don't make that sort of the centerpiece of the child's sense of self.

Cherinee: Why are you so far behind?

Danny: You're too fast for me.

Cherinee: Your bike has gears, you know.

Danny: Huh?

Cherinee: Your bike has gears.

Coreta: We involve Cherinee in everything that we did. I think it's very important so they feel a part of the family, the community, the school.

Danny: Careful, cars are coming.

Cherinee: I did a math test on fractions, Daddy, and I got 100. It was really easy.

Danny: You got 100--good job.

Cherinee: My parents help me feel good about myself.

Cherinee: I love turning a mixed number into an improper fraction.

Danny: Oh, really?

Cherinee: Yeah, I love that.

Danny: Well, you got fractions down pat now.

Danny: It takes a parent to consistently support them, push them, motivate them, so that they will know that in spite of what "I'm going through as a child, I can still be like any other child that I want to be. I can achieve. I can be what I want to be." That's the thing that's helped Cherinee a lot. We've always encouraged her that way. And no matter how you are, no matter how many seizures you have on a daily basis, you are going to accomplish what you set out to be and what you want to be.

Danny: Go, girl, go! Almost there.

Cherinee: In general, I feel... I feel free. I can just be me.

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