While cerebral palsy (pronounced seh-ree-brel pawl-zee) is a blanket term commonly referred to as “CP” and described by loss or impairment of motor function, cerebral palsy is actually caused by brain damage. The brain damage is caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing — before birth, during birth, or immediately after birth.

Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning.

What is Cerebral Palsy?

Cerebral palsy is non-life-threatening – With the exception of children born with a severe case, cerebral palsy is considered to be a non-life-threatening condition. Most children with cerebral palsy are expected to live well into adulthood.

Cerebral palsy is incurable – Cerebral palsy is damage to the brain that cannot currently be fixed. Treatment and therapy help manage effects on the body.

Cerebral palsy is non-progressive – The brain lesion is the result of a one-time brain injury and will not produce further degeneration of the brain.

Cerebral palsy is permanent – The injury and damage to the brain is permanent. The brain does not “heal” as other parts of the body might. Because of this, the cerebral palsy itself will not change for better or worse during a person’s lifetime. On the other hand, associative conditions may improve or worsen over time.

Cerebral palsy is not contagious; it is not communicable – In the majority of cases, cerebral palsy is caused by damage to the developing brain. Brain damage is not spread through human contact. However, a person can intentionally or unintentionally increase the likelihood a child will develop cerebral palsy through abuse, accidents, medical malpractice, negligence, or the spread of a bacterial or viral infection.

Cerebral palsy is manageable – The impairment caused by cerebral palsy is manageable. In other words, treatment, therapy, surgery, medications and assistive technology can help maximize independence, reduce barriers, increase inclusion and thus lead to an enhanced quality-of-life.

Cerebral palsy is chronic – The effects of cerebral palsy are long-term, not temporary. An individual diagnosed with cerebral palsy will have the condition for their entire life.

Cerebral Palsy is the Result of a Brain Injury or a Brain Malformation

Those with cerebral palsy were most likely born with the condition, although some acquire it later.

It was once thought that cerebral palsy was caused by complications during the birthing process. While this does happen, it is now widely agreed that birthing complications account for only a small percentage, an estimated 10 percent, of cerebral palsy cases.

Current research suggests the majority of cerebral palsy cases result from abnormal brain development or brain injury prior to birth or during labor and delivery. Accidents, abuse, medical malpractice, negligence, infections, and injury are some known risk factors that may lead to cerebral palsy.

Cerebral Palsy
Causes Physical Impairment

An individual with cerebral palsy will likely show signs of physical impairment. However, the type of movement dysfunction, the location and number of limbs involved, as well as the extent of impairment, will vary from one individual to another. It can affect arms, legs, and even the face; it can affect one limb, several, or all.

Cerebral palsy affects muscles and a person’s ability to control them. Muscles can contract too much, too little, or all at the same time. Limbs can be stiff and forced into painful, awkward positions. Fluctuating muscle contractions can make limbs tremble, shake, or writhe.

Balance, posture, and coordination can also be affected by cerebral palsy. Tasks such as walking, sitting, or tying shoes may be difficult for some, while others might have difficulty grasping objects.

Other complications, such as intellectual impairment, seizures, and vision or hearing impairment also commonly accompany cerebral palsy.

Every Case of Cerebral Palsy
is Unique to the Individual

Every case of cerebral palsy is unique to the individual. One person may have total paralysis and require constant care, while another with partial paralysis might have slight movement tremors but require little assistance. This is due in part by the type of injury and the timing of the injury to the developing brain.

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LIFE WITH CEREBRAL PALSYRecently Diagnosed with Cerebral Palsy?
Here’s What You Can Do

Questions. That is how life with cerebral palsy begins once a diagnosis is delivered. What is it? How did this happen to my child? What kind of life will my child have? How will my family be affected? How will I find the strength to manage this? Who will pay for all of the medical expenses? Who will take care of my child when I’m gone?

A journey begins. Not the expected journey, but still, a journey full of joy and sadness. A journey full of laughter, smiles and tears. A journey full of challenges, failures, successes and triumphs.

Cerebral palsy is an injury to the brain that affects the body. It’s non-life-threatening. It is not going to get worse. It can’t be spread. While the brain damage that caused cerebral palsy is not progressive, secondary conditions — such as difficulty eating, bladder/bowel problems, seizures, and learning disabilities — may develop. These associative conditions can get better, or get worse, over time.

For the individual with cerebral palsy, the condition is part of what makes the person who they are — but it doesn’t have to define the person. There will be challenges, yes, but many are surmountable.

You are not alone. People with cerebral palsy are not alone. Many families touched by cerebral palsy offer insight to others. Family, friends and co-workers provide support. Expert assistance is available from medical specialists, educators, therapists and others. The government is opening more funding avenues. Support groups are expanding all over the country, and respite, daycare and summer camps are plentiful. Research offers new understanding. Assistive technology and adaptive equipment provide better quality-of-life, and benefit programs offer financial assistance. In a word, more help is available than ever before.

Where questions exist, individuals and organizations are working toward answers. MyChild was designed to support families by providing comprehensive information and resources, leading to a better understanding of cerebral palsy. In addition, MyChild hopes to connect families with the resources, experts and inspiration required to embrace a world with cerebral palsy in it. MyChild provides call center assistance and online support for any questions, at any stage of the child’s development.

Help and hope for a lifetime.

The Journey Begins!

DISABILITY ETIQUETTE 101: Proper Use of Terminology

When a parent learns their child has cerebral palsy they begin to define and understand the condition. They may have many questions.

What does this mean? Is my child impaired? Disabled? Handicapped?
Is my child considered a special needs child?
Is cerebral palsy a disease or is cerebral palsy a disability?
What does cerebral palsy mean?

Words such as disability, impairment, special needs, and handicap are helpful when used correctly. However, the same words, when misunderstood and misused, can be hurtful, offensive and harmful.

Is Cerebral Palsy an Impairment?

Yes. Impairment is the loss or limitation of function. Impairment is a condition that limits a person to some degree.

Those with cerebral palsy have a neurological condition which primarily causes physical impairment involving limitation or loss of function and mobility. They experience difficulty with muscle coordination, muscle control, muscle tone, reflexes, balance or posture. They may have difficulty with fine or gross motor skills. Their facial muscles may be affected.

Those with cerebral palsy often have associative and co-mitigating conditions that also impose additional challenges, such as a learning impairment, seizures, and vision or hearing loss.

A person can have impairment without having a disability.

Is Cerebral Palsy a Disability?

Sometimes. A disability is an impairment that substantially limits a person’s ability to perform life activities within a range comparable to someone the same age and circumstance. A disability may include impairments that limit mobility, hearing, sight, and communication.

The term “disability” is primarily used to qualify a person fairly for government benefits, access to healthcare, special education programs, worker’s compensation, workplace accommodations, travel accommodations, or health insurance.

All individuals with disability have impairment. However, a person can have impairment without disability. In other words, their impairment does not restrict them from performing a life activity. For example, a person who wears glasses or contact lenses to correct nearsightedness has impairment, but does not have a disability; the impairment — nearsightedness — is correctable and therefore does not restrict performance. However, a person declared legally blind is unable to perform certain functions, such as driving, and hence is said to have a disability that restricts performance.

Is Cerebral Palsy a Disease?

No. Cerebral palsy is not a disease, it is actually a term used to describe a range of conditions that typically cause physical impairment.

Is Cerebral Palsy Considered a Handicap?

A handicap is a situational barrier or obstacle that limits activity or restricts participation, often temporarily. The World Health Organization (WHO) defines two types of handicaps:

  • Activity limitations – are difficulties an individual may have in executing a task or action
  • Participation restrictions – are problems an individual may have in involvement in life situations

A handicap is apparent only when the barrier or obstacle exists. For a person who uses a wheelchair for mobility, stairs and narrow hallways may present a handicap. Ramps, elevators, and alternate hallways remove the handicap.

Today, much is being done to remove barriers and obstacles for those with impairment. WHO and U.S. government agencies guided by the Americans with Disabilities Act, collaborate with employers, retailers, transportation sources and private groups on a mission to identify obstacles and barriers. They also work to reduce or eliminate handicaps. These organizations promote inclusion, accessibility, and accommodation standards.

Do Individuals with Cerebral Palsy Have Special Needs?

Those with conditions that may require additional assistance, help, or technology are generally considered to have special needs. The term “special needs” generally refers to the actual need a child has, particularly in situations where accessibility is required, such as access to education, transportation, work settings, government programs, public venues, and housing, to name a few.

Proper Terminology is Empowering

Misused, outdated, or negative terminology is inappropriate and hurtful. A person with impairment should not be defined by his or her condition: He is not spastic, he has spastic cerebral palsy. Recognizing outdated terminology is respectful: She is not wheelchair-bound, she uses a wheelchair. Eliminating negative tone is respectful: He is not ‘special ed,’ he participates in the special education program. Eliminating disrespectful slang and words that imply victimization is appropriate: He is not a victim, unfortunate, crippled, sufferer, stricken by, retarded, spastic, or incapacitated; he simply has impairment.

As those within the medical industry and the community-based support network move towards universally accepted concepts and shared terminology, many terms will continue to be modified, changed, and more clearly define. Terminology continues to evolve.

Even though the terms impairment, disability and handicap are accepted today, they may be changed tomorrow. In fact, in 2005 the World Health Organization (WHO) recommended classifying cerebral palsy as an ‘activity limitation’ versus ‘impairment.’ Yet, others prefer ‘activity ability’ in order to concentrate on a person’s capability, rather than his or her limitation. Some recommend using the term ‘participation restriction’ in place of ‘handicap.’ Although recommendations are made, not all are established.

“Becoming aware of our own perceptions, stereotypes and discomforts around particular disabilities is the first step towards addressing subtle biases that could possibly be projected onto individuals with disabilities,” St. Mary’s County Commission for People with Disabilities states. “Our own beliefs and comfort level around disability has a major impact on how we view, interact, and provide service and programs.”

Disability Terminology

DOs:

Do Use Terminology Properly

Become aware of proper meaning behind terms. Improper use leads to hurt feelings, offended individuals, and disrespectful use of language.

Do Respect the Person, First

Referring to an individual by their impairment is no longer acceptable. Acceptable terminology accentuates the person first, then mentions their impairment, only if pertinent. Labeling an individual is inappropriate. Describing an individual is appropriate. Do this by placing emphasis on the person, not their condition. It is proper to say ‘person with disability’ as opposed to ‘disabled person.’ It is proper to say ‘person with epilepsy’ versus ‘the epileptic.’ It is appropriate to state ‘the boy with quadriplegia’ versus ‘the quadriplegic.’

Do Get to Know the Level of Impairment

A person with total hearing loss is considered ‘a person who is without hearing,’ but is not considered a ‘deaf person.’ Likewise, a person with partial hearing loss is referred to as ‘a person with hearing impairment.’ A person with total sight loss is considered ‘a person who is blind,’ but is not considered a ‘blind person.’ A person with a varying degree of sight — a person who can see but is not considered legally blind, for example — is ‘a person with vision impairment.’ A person who displays trouble speaking, uses voice prosthesis, or appears to stutter is ‘a person with speech impairment.’

DON’Ts:

Don’t Intentionally Misuse Terminology

Don’t intentionally misuse terminology in a misleading, hurtful, disrespectful or offensive manner. Do not use slang terminology to label a person. Words such as crippled, retarded, disabled, impaired, spastic, special ed, or handicapped are offensive labels. Slang terminology is disrespectful and hurtful.

Don’t Use Outdated Terminology

Terms like physically challenged, differently-abled, physically-handicapped, and wheelchair-bound are outdated. The current trend is to limit the use of labeling terms with negative connotations. Descriptive terms without judgment are accepted. For instance, ‘the individual using the wheelchair’ is deemed appropriate only if the use of the wheelchair is relevant.

Don’t Refer to a Person with Impairment in a Negative Way

Negativity is disempowering. The impairment is a condition, not a result of violence. A person should not be given a label that insinuates inappropriate treatment. For instance, do not use victim, sufferer, stricken by, deformed, incapacitated, unfortunate, invalid, or afflicted with. For instance, ‘John may have cancer,’ but John is never ‘a cancer victim.’