Without the proper interventions, and sometimes, even with them, the Quality of Life for children with Cerebral Palsy is much lower than that of their nondisabled peers. Their physical, emotional, social, and family health, as well as financial stability, fall slightly below those of their nondisabled peers (Waters, Maher, Salmon, Reddihough, D. and Boyd, 2005).
Yet, although there are negative aspects attributed to growing up with Cerebral Palsy, there have been positive aspects attributed to it as well.
Some disadvantages that children and adolescents with Cerebral Palsy have identified are:
Difficulty with motor movements and getting around
Lack of insight
Preoccupation with the future
Pain
Restrictive movement
Some advantages that children and adolescents with Cerebral Palsy have identified are:
Better ability to cope with issues
More ability to manage challenges
Higher level of self-advocacy
Choice of special or advantageous schools
Encounters with celebrities
Generally, students do not identify having Cerebral Palsy as a disability as something that lowers their quality of life unless they experience chronic pain or really difficult movements, and in these cases, they listed the limitations and not the disability as the cause for their lowered quality of life.
The voice of the children:
Ability to cope with challenges: Children with Cerebral Palsy typically possess a very strong capability of dealing with problems and challenges.
“Try a few times, and then you will succeed. But sometimes it might look like the world is gonna end, but for some reason, for me I get over those things. Because I’ve been having CP for 13 years already, so I’m pretty used to it”
Being around peers that have disabilities: Although having friends that are nondisabled, many children with Cerebral Palsy find it important do have friends who are like them as well.
“I went a couple summers ago [summer camp for children with disabilities] but a I mean I missed it, I wanted to go back and I came back happy and everything and my friends are like: ‘‘What is wrong with you?’’ And I was like… I had a good time, I feel happy. I was around people like me.”
More advantages: Some children with Cerebral feel that their disability gives them advantages over their nondisabled peers; still, if given the choice, they would choose to be normal.
“Uh, well, it (the CP) makes it (life) better ‘cause I have advantages, more than other people…I don’t have to be in my school that I am right now, I could go to like a special school, but I’d, I, I prefer not to…I have choices but I prefer picking normal.”
Inability to do activities: Although students with Cerebral Palsy may feel like they have a good life, they still possess a deep-felt desire to participate in normal activities.
“But sometimes I wish I didn’t have it (CP) because there are certain sports that I can’t do and…basically, all my friends ski and I’ve never set foot on skis. So sometimes say, they are going skiing, I am like, well, they want me to come with them and I am like…I don’t ski and they are just like, take a lesson and it is not as simple as that you know, I just can’t set foot on skies and it is like, I can ski after. You know it is harder for me.”
How they feel: Sometimes students with Cerebral Palsy feel overwhelmed by their inability to do some things that their nondisabled peers can.
“…Well, like I said there is good days and bad days. There’s days when I just can’t take it anymore and there’s other days when I’m just used to it. Then there’s days when I just like Why? Why me?”
Children with Cerebral Palsy, while receiving a high level of support right now, could benefit from specialized programs that would help improved their quality of life.
What else we can do:
- Develop individual or group programs to enhance mastery motivation and self-esteem to augment confidence and competence in new life situations
- Maintain a supportive and cohesive family and supportive school environments and the promotion of healthy peer relationships can also be addressed
- Health care providers can assume a greater role in advocating for better access to and involvement in different activities and environments in the local community
The scope of rehabilitation interventions needs to be broadened beyond mobility, self-care and other functional domains in order to promote participation in preferred activities, which hopefully can enhance the quality of life of adolescents with CP. (Shikako-Thomas, Lach, Majnemer, Nimigon, Cameron , & Shevell, 2009)
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