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What does the term "cerebral palsy" mean?
"Cerebral palsy" literally breaks down as cerebral = "of the brain" and palsy = "lack of muscle control". In other words: a lack of muscle control due to an injury to the developing brain. Cerebral palsy (CP) is a medical diagnosis that professionals use to describe a wide variety of conditions. CP is an umbrella term and it is important to remember that every individual who has CP is unique. It can be helpful to educate oneself on common traits and causes of CP (please see our Guide to Cerebral Palsy), however these generalizations do not apply to everyone.
ICF Framework for Rehabilitation in CP
A research team from McMaster University has created videos to help parents of children with CP understand the International Classification of Functioning, Disability and Health (ICF) framework for rehabilitation in CP. Please follow the link below to view the videos, learn about the ICF framwork, and give your feedback!
Canchild About CP webpage:
Taking on Barriers
CP, in and of itself, is not a barrier to leading a full and satisfying life. People with CP face many barriers and obstacles that have little to do with their physical or cognitive abilities. These barriers are caused by external forces such as: inaccessible buildings and transportation, societal attitudes, and exclusion from education and employment opportunities. We all have a role to play in breaking down these barriers and ensuring that the rights of all people are honoured. Taking on barriers can be as simple as being aware of our own biases and prejudices when we are interacting with others.
When you meet someone with CP
Language and attitudes are very important. If you do not have experience interacting with people with CP, there are some key things to keep in mind. These tips will help you to remove barriers so that you and the individual you are communicating with can enjoy a rich and engaging interaction:
- When interacting with someone who uses an alternate form of communication, take a moment to determine how the individual communicates (symbol board, voice synthesizer etc.)
- A person with CP would rather repeat themselves than to have someone pretend that they understand. If you are not sure what someone said- ask!
- Try not to assume that because someone talks differently they also hear differently. Try and speak the same way you would to anyone else
- For many people with CP the muscles around the mouth and throat can be challenging to control. Do not mistake slow, slurred or halting speech as an indication of someones' intelligence. It can be very frustrating for someone with CP to be 'talked down to' by their peers
- Try not to interrupt or cut off someone who speaks more slowly than you. Just because someone with CP may take longer to get an idea out does not mean that their ideas are less important than yours
Inclusion and Participation
People with CP are people first and it can be extremely frustrating to be treated differently. Never describe someone with CP as "wheelchair bound", "spastic", "afflicted", "suffering", or "handicapped". These terms are very hurtful and negative. People with CP do not want pity or charity but rather the right to full inclusion and participation. At times access to full inclusion and participation requires the use of assistive devices, personal attendants, adapted vehicles, specialized programming and so on. People with CP and their families will often have significant personal financial costs associated with gaining equal access to all areas of life. The OFCP is committed to enabling people with CP to have the same opportunities as the rest of society. Our work includes funding for Assistive Devices, Day Programs, and Vacations as well as Person-Centered Planning Services.
"Too often people with CP are treated as though they are objects that need to be fixed. I don't want to be fixed, I am not broken. I just want the support I need to live my life"
The Purpose of a Diagnosis
For many families, receiving a diagnosis of cerebral palsy (CP) can be a positive first step in determining how to move forward and support their child. For other families, a diagnosis of CP can be an intimidating and disheartening experience. As a parent you may not know what to expect and the "world" of CP can be overwhelming and challenging to understand. It is important to realize the place and purpose of a diagnosis- it is a tool to help plan for treatment and management. When your doctor gives your child a diagnosis of CP it is to help you access therapies and other services to help improve your child's quality of life and functional capabilities. A diagnosis does not define a person, it is simply a tool.
The History of the CP Diagnosis and Definition
Medical Professionals and researchers have been trying to formulate a definition of cerebral palsy for over 150 years (Morris, 3). In fact, the famous psychoanalyst Sigmund Freud even attempted to define CP and was one of the first people to indicate that it is almost impossible to know if CP is the result of birth trauma, or a predisposing factor for a difficult birth. Freud also noted that it is generally unhelpful to classify cases as being either congenital (before birth) or acquired (after birth) (Morris, 4). The fact that every individual with CP is unique has meant that a universal definition and classification system has remained elusive. CP has become the focus of treatment services, advocacy and research efforts- all of which can help to improve the quality of life and inclusion for people with CP (Rosenbaum, 8). Despite the personal benefits of obtaining a diagnosis of CP, after 150 years of debate, " we do not yet have a universally accepted definition of CP; nor do we have an agreed method for classifying the impairment" (Morris, 6).
Where are we Now?
Though the medical establishment recognizes that they do not yet have a universally accepted definition of CP, they do have a interim definition and guidelines for how to diagnose CP. This definition and classification is a tool used to establish treatment and management goals, track the number of people with CP, provide a description of the individual in question, and to compare cases and evaluate changes within the same individual at different points in time:
"CP describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy and by secondary musculoskeletal problems" (Rosenbaum, 9-11)
In 2006, a group doctors who specialize in CP formed an executive committee to try and lay out a working definition (above) and establish simple guidelines to help classify people with CP. These guidelines are considered the current 'best practice' for diagnosing CP, but they have not been universally adopted. When your doctor is diagnosing your child with CP, several components may be taken into consideration. These areas of interest will help your doctor to determine if your child should be diagnosed with CP or not. They are as follows:
usually tested using the "Gross Motor Function Classification System" / GMFCS
seizure disorders, hearing and vision, cognitive and attention deficit, emotional and behavioral issues, musculosketetal problems
Anatomical and neuro-imaging findings
only used where and when it is available
Causation and timing
only be noted when there is reasonable and firm evidence
As a parent, it is your responsibility to take what you learn from your doctor and other health care professionals and use that information with the best interests of your child in mind. No one has the authority to tell you that certain therapies are required or not- it is your unique privilege as the parent of a child with CP to decide what interventions are best. Remember that the diagnosis of CP should be an empowering tool to help you plan for the future and to access services for your child. All people share similar needs, desires and goals. Children with CP should always be treated as children first.
To find out more about the types and causes of Cerebral Palsy please see our Guide to Cerebral Palsy.
Rosenbaum, Peter et al. (April 2006) Definition and Classification of CP. Center for Childhood Disability Research, Hamilton Ontario.
Morris, Christopher. Definition and Classification of CP, A Historical Perspecitve. Department of Public Health, University of Oxford.