It is fun when I get to help him because sometimes when everybody is up ahead, I get to run back with him and mommy says, “Good job.” When he falls down, I help him up. And like when he wants to eat in the living room, I carry his food. I carry his dishes when it is empty for him, and I help him get in bed when he needs help. I bring him things just like he brings me things sometimes.
I don’t know what it is called, but he has something that involves his legs — “encyclopedia.” That is what Charlie said. It is a long word. It is two different words yes, it is Cerebral Palsy. I switched the “a” with the “s”.
Sylvie, sister, 6
What kids should know
They shouldn’t just say, “Well, you’re so special so I won’t be around you.” They should just say, “Well, since you’re so special I can help you and make you feel comfortable because you have cerebral palsy.” They should make them feel they are part of everything too.
Sylvie, sister, 6
What parents should know
Oh, that they should let their children be. Don’t be all up on them since they have cerebral palsy. Don’t do everything for them. Let them try things on their own.
Sylvie, sister, 6
I’m always by her side
Well, I help Sarah by encouraging her, and I’m always by her side when she needs help. I help her at school sometimes. We play games together as in like I help her with her head movements. I talk to her using the mini mark [communication device].
Molly, sister, 11
The most difficult thing is answering all those questions people ask. And I feel bad because Sarah is right there. That’s the hardest thing when we go out to fun places we always have to answer questions…everyone’s asking you about it. If they say, “What’s wrong with her?” We’ll say, “Sarah, is something wrong?” And like then we’ll say, “She looks fine to us. Thanks for your concern, though.” They get the hint.
Molly, sister, 11
Everyone is different
Everyone is different. And if anybody asks about something that you are not comfortable with answering, you don’t have to answer. Kids should always treat people with cerebral palsy no different than any other people.
Molly, sister, 11
Making adjustments
There are things I can’t do because of my CP. I may not be able to walk or go on all the big rides at an amusement park, but with the help of my friends and family I have learned to deal with it. My family does a lot for me. They will carry me up stairs or drive me to the doctors. They have accepted me. With their help I can swim in a pool and go to visit friends. I am thankful for everything I am able to do. I know that my friends and family sometimes wish I wasn’t disabled because it affects their lives a lot. For example, my family used to go snorkeling in Florida, but they can’t anymore because I can’t. They now have limits as to what they can do because of me. I know this frustrates them but they try not to show it.
Stephanie, 14
My dad’s unconditional love
It’s hard for me to be angry with my father because he does so much for me. If I fight with him I always feel guilty afterwards. I think my disability has made our relationship stronger because we’ve been through so much together. He has helped me recover from surgeries and grow strong. My dad has provided unconditional love and support for me all my life. I am very thankful and grateful to him and everyone else in my family for all they have done.
Stephanie, 14
My brother’s invincible sense of humor
I figured out eventually that both of my hips were dislocated so I had surgery, then I went into rehab. My brother and my dad were always extremely supportive during the three years that I had stopped walking. My brother has this invincible sense of humor that just buoyed me whenever I needed to be buoyed–the times when I really didn’t want to be thinking about my current situation, he just made me laugh. My brother and my dad both do that, but my brother is truly one of the best people and I think I’m very privileged to have had him around during the rehab process. Even though they only came up for a week, I felt really special that I had a brother who was so caring and sensitive to my needs and just was able to be there for me when I needed it. I don’t really know of any other siblings who have such devotion to each other among my peers.
Emily, 18
As a young child, I was very resentful of the fact that it seemed like my brother could get away with anything and everything because of his cerebral palsy. For example, if we were fighting and my brother lost his temper and hit me, my mom would ask me not to get mad at my brother and to forgive him because he has a disability and there are so many things that I can do that he cannot. She would get angry at me if I retaliated and hit my brother back. As a small child who believed her brother was no different than anyone else, my mom’s reasoning seemed so unfair at the time. I remember thinking, “why am I getting yelled at if he started it?” Now that I’m older, I can understand where she was coming from.
Priya, 25
Let your sibling be heard
Listen to your sibling. I also find that it is also important just to listen to your brother or sister. A lot of times, kids with cerebral palsy are not heard which can be extremely frustrating for them. Let your brother or sister be heard–talk to them and listen to what they have to say. I feel my brother is often times more insightful than my other friends because he’s been through so much. I’m often taken back by how articulate he is.
Priya, 25