Cerebral palsy, also known as CP, is a condition caused by injury to the parts of the brain that control our ability to use our muscles and bodies. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. Often the injury happens before birth, sometimes during delivery, or, like Jen, soon after being born. CP can be mild, moderate, or severe. Mild CP may mean a child is clumsy. Moderate CP may mean the child walks with a limp. He or she may need a special leg brace or a cane. More severe CP can affect all parts of a child's physical abilities. A child with moderate or severe CP may have to use a wheelchair and other special equipment. Sometimes children with CP can also have learning problems, problems with hearing or seeing (called sensory problems), or mental retardation. Usually, the greater the injury to the brain, the more severe the CP. However, CP doesn't get worse over time, and most children with CP have a normal life span.
About 500,000 people in America have some form of CP. Each year 8,000 infants and nearly 1,500 preschool-age children are diagnosed with CP.
There are three main types of CP:
Spastic CP is where there is too much muscle tone or tightness. Movements are stiff, especially in the legs, arms, and/or back. Children with this form of CP move their legs awkwardly, turning in or scissoring their legs as they try to walk. This is the most common form of CP.
Athetoid CP (also called dyskinetic CP) can affect movements of the entire body. Typically, this form of CP involves slow, uncontrolled body movements and low muscle tone that makes it hard for the person to sit straight and walk.
Mixed CP is a combination of the symptoms listed above. A child with mixed CP has both high and low tone muscle. Some muscles are too tight, and others are too loose, creating a mix of stiffness and involuntary movements.
More words used to describe the different types of CP include:
Diplegia--This means only the legs are affected.
Hemiplegia--This means one half of the body (such as the right arm and leg) is affected.
Quadriplegia--This means both arms and legs are affected, sometimes including the facial muscles and torso.
With early and ongoing treatment the effects of CP can be reduced. Many children learn how to get their bodies to work for them in other ways. For example, one infant whose CP keeps him from crawling may be able to get around by rolling from place to place.
Children younger than three years old can benefit greatly from early intervention services. Early intervention is a system of services to support infants and toddlers with disabilities and their families. For older children, special education and related services are available through the public school to help each child achieve and learn.
Typically, children with CP may need different kinds of therapy, including:
Physical therapy (PT), which helps the child develop stronger muscles such as those in the legs and trunk. Through PT, the child works on skills such as walking, sitting, and keeping his or her balance.
Occupational therapy (OT), which helps the child develop fine motor skills such as dressing, feeding, writing, and other daily living tasks.
Speech-language pathology (S/L), which helps the child develop his or her communication skills. The child may work in particular on speaking, which may be difficult due to problems with muscle tone of the tongue and throat.
The child may also find a variety of special equipment helpful. For example, braces (also called AFOs) may be used to hold the foot in place when the child stands or walks. Custom splints can provide support to help a child use his or her hands. A variety of therapy equipment and adapted toys are available to help children play and have fun while they are working their bodies. Activities such as swimming or horseback riding can help strengthen weaker muscles and relax the tighter ones.
A child with CP can face many challenges in school and is likely to need individualized help. Fortunately, states are responsible for meeting the educational needs of children with disabilities.
For children up to age three, services are provided through an early intervention system. Staff work with the child's family to develop what is known as an Individualized Family Services Plan, or IFSP. The IFSP will describe the child's unique needs as well as the services the child will receive to address those needs. The IFSP will also emphasize the unique needs of the family, so that parents and other family members will know how to help their young child with CP. Early intervention services may be provided on a sliding-fee basis, meaning that the costs to the family will depend upon their income.
For school-aged children, including preschoolers, special education and related services will be provided through the school system. School staff will work with the child's parents to develop an Individualized Education Program, or IEP. The IEP is similar to an IFSP in that it describes the child's unique needs and the services that have been designed to meet those needs. Special education and related services, which can include PT, OT, and speech-language pathology, are provided at no cost to parents.
In addition to therapy services and special equipment, children with CP may need what is known as assistive technology. Examples of assistive technology include:
Communication devices, which can range from the simple to the sophisticated. Communication boards, for example, have pictures, symbols, letters, or words attached. The child communicates by pointing to or gazing at the pictures or symbols. Augmentative communication devices are more sophisticated and include voice synthesizers that enable the child to "talk" with others.
Computer technology, which can range from electronic toys with special switches to sophisticated computer programs operated by simple switch pads or keyboard adaptations.
The ability of the brain to find new ways of working after an injury is remarkable. Even so, it can be difficult for parents to imagine what their child's future will be like. Good therapy and handling can help, but the most important "treatment" the child can receive is love and encouragement, with lots of typical childhood experiences, family, and friends. With the right mix of support, equipment, extra time, and accommodations, all children with CP can be successful learners and full participants in life.
Tips for Parents:
Learn about CP. The more you know, the more you can help yourself and your child. See the list of resources and organizations at the end of this publication.
Love and play with your child. Treat your son or daughter as you would a child without disabilities. Take your child places, read together, have fun.
Learn from professionals and other parents how to meet your child's special needs, but try not to turn your lives into one round of therapy after another.
Ask for help from family and friends. Caring for a child with CP is hard work. Teach others what to do and give them plenty of opportunities to practice while you take a break.
Keep informed about new treatments and technologies that may help. New approaches are constantly being worked on and can make a huge difference to the quality of your child's life. However, be careful about unproven new "fads."
Learn about assistive technology that can help your child. This may include a simple communication board to help your child express needs and desires, or may be as sophisticated as a computer with special software.
Be patient, keep up your hope for improvement. Your child, like every child, has a whole lifetime to learn and grow.
Problems People Report As They Get Older (extracted from http://www.scope.org.uk)
There is relatively little written about the subject of CP and aging. Many people, including some professionals, assume that because cerebral palsy is a "non-progressive disorder" that physical functioning will remain much the same throughout life. This isn't necessarily the case. Whilst some people lose no more function than might be expected from the normal ageing process, others do and new physical problems can emerge.
It can be a common perception that growing older is associated with poor physical health, mental incapacity and an inability to function independently. Whilst physical abilities do decline with age, it is slower and to a lesser degree than you may think. The impression that older people experience severe physical decline is partly because of a confusion between primary ageing - changes brought about by increasing age - and secondary ageing - changes from disease, disuse or abuse of our bodies. In fact, many people retain good physical health into their 70s, 80s and beyond.
However, for those who have lived a lifetime with a physical impairment, ageing effects can become apparent earlier than expected. Cerebral palsy is an example of a developmental disorder in which physical functioning can deteriorate with ageing as a result of poor mechanical efficiency.
Comprehensive scientific evidence on the physical effects of ageing and cerebral palsy is not available, though surveys have highlighted some of the problems that people encounter. What is clear is that people with cerebral palsy age in the same way as people without a disability (primary ageing) but some people with cerebral palsy may experience secondary ageing effects. These are likely to be the long-term effects of the original impairment. Below are some of the more common problems reported by people in their thirties and forties or, sometimes, a little earlier.
- Increased levels of pain and discomfort
- Osteoarthritis (pain and stiffness in the joints)
- Increase in spasms
- Increase in contractures (shortening of muscles)
- Less efficient motor control
- Joint problems
- Tight muscles
- Gastro-intestinal problems
- New back pain
- Increase in back pain
- Emergence of incontinence
- Increase in incontinence
- Loss of joint flexibility
- Reduced energy levels and fatigue