Understanding Cerebral Palsy
Cerebral palsy (CP) is a term used for a group of non-progressive, non-contagious, non life-threatening motor conditions that cause physical disability in human development. It affects body movement, muscle tone, posture, and motor skills. CP can also lead to other health issues including vision, hearing, speech, and learning disabilities. All types of CP are often accompanied by secondary musculoskeletal problems that are caused by the underlying disorder.
“Cerebral” refers to the brain and “Palsy” to a disorder of movement or posture. Children with CP may not be able to walk, talk, eat or play the same way as most other children. CP presents in varying degrees for every person diagnosed.
CP is one of the most common congenital - existing before birth or at birth - disorders of childhood. It is usually caused by abnormal development or brain injury that occurs before or during a child's birth, or during the first 3 to 5 years of a child's life.
There are three major classification types of CP to describe different movement impairments. These types also reflect the areas of the brain that are damaged. They are spastic cerebral palsy – stiffness and movement difficulties, athetoid cerebral palsy – involuntary and uncontrolled movements, and ataxic cerebral palsy – disturbed sense of balance and depth perception.
Symptoms of CP
CP symptoms appear during infancy or preschool years. Infants with CP are usually slow to reach developmental milestones such as rolling over, sitting, crawling, and walking. Generally, CP causes impaired movement associated with exaggerated reflexes or rigidity of the limbs and trunk, abnormal posture, involuntary movements, unsteadiness of walking, or some combination of these. The effect of CP on functional abilities varies greatly.
CP often comes with other conditions related to developmental brain abnormalities, such as intellectual disabilities, vision and hearing problems, or seizures. It affects muscle control and coordination, so even simple movements – like standing still – are difficult. Other vital functions that also involve motor skills and muscles – such as breathing, bladder and bowel control, eating, and learning – may also be affected. CP does not get worse over time, but the clinical picture may show signs of deterioration with age.
The severity of CP symptoms varies widely from very mild and subtle to very profound. They may include:
On a whole, CP symptoms are very diverse, and the effects fall on a continuum of motor dysfunction from slight clumsiness to severely impaired movement. The classical symptoms include: spasticity, spasms, and other involuntary movements such as in facial gestures, unsteady gait, problems with balance and/or soft tissue with decreased muscle mass.
Other neurological issues include:
Many people with CP have normal or above average intelligence, but their ability to express their intelligence may be limited by difficulties in communicating. However, regardless of intelligence level, all children with CP can improve their abilities substantially with appropriate interventions. Most children with CP need significant medical and physical care, including physical, occupational, and speech/swallowing therapy.
CP is permanent and has no cure, but is manageable with early and ongoing treatment, therapy, special equipment, and in some cases, surgery can help reduce the disabilities associated with the condition. CP does not get worse over time, but medical intervention is usually limited to the treatment and prevention of complications from the effects.
CP has remained a significant health problem, in spite of advances in medical care. The number of people affected by CP has increased over time and affects both sexes and all ethnic and socioeconomic groups.
Care for people with CP is complicated and requires a number of different services and specialists. A broad spectrum of treatments may help minimize the effects of CP and improve functional abilities.
Every case of CP is unique to the individual. In general, the earlier treatment starts the better chance children have of overcoming developmental disabilities or learning new ways to accomplish the tasks that challenge them. Many different treatments and therapies are available, but parents and the child’s care team must work together to choose the right treatments for a particular child to meet the needs of that individual child. While specific therapies can help a child develop specific skills and abilities, the overall goal of treatment is to help someone with CP reach their greatest potential physically, mentally, and socially.
The ability to live independently with CP varies widely, depending partly on the severity of each person's impairment, and partly on the capability of each person to self-manage the logistics of his or her own life. Some individuals with CP require personal assistant services for all activities of daily living. Others only need assistance with certain activities, and still others do not require any physical assistance at all. But regardless of the severity of a person's physical impairment, a person's ability to live independently often depends primarily on the person's capacity to manage the physical realities of his or her own life autonomously.
Parenting a child with CP
When your child is diagnosed with any disabling condition, it affects the whole family, and the challenges of parenting your child could be daunting.
Unlike biological parents, adoptive parents know their child has CP, or any other disability beforehand, and do not face the disappointment or shattered expectations that may come with the diagnosis. Adoptive parents can also prepare for the financial, medical and treatment supports that their child will need.
However, regardless of whether you are prepared or not for the task of parenting a child with CP, the challenges of care- giving remain constant over time. One of the best ways to ease the journey is to implement a strong support system. Having a child with CP is not easy, but that doesn’t mean you are helpless. You will need to become your child’s best advocate, ensuring they get the care they need.
The good news is there are many options available for children with CP and their parents/caregivers in terms of medical and surgical treatments, practical help and social care support, and a wealth of information and resources. Talk to your doctor about finding those supports and resources in your area or community.
In the meantime, here are some helpful tips on parenting a child with CP:
In order to be an effective advocate for your child, you need to understand all the complexities. Do your homework and research as much as you can so that you can work effectively with the health care professionals for your child.
Build a support network with family and friends
Educate family and friends about your child’s diagnosis to give them a better understanding of your child’s behavior in relation to the condition.
Provide a warm, loving, nurturing environment
A positive environment will allow your child to feel safe and valued as they develop and grow.
Establish a regular routine in your home
A routine in the home establishes a sense of balance, continuity and manages expectations for all children, regardless of special needs.
Family time and activities
Establish a regular time of the week for quality family time, and plan activities in which every family member can participate. Remember to keep it simple and that spending time together is what really counts.
For the full list of these tips, visit CPFamilyNetwork.org
Helpful links or resources for cerebral palsy
The Ontario Federation for Cerebral Palsy - http://www.ofcp.ca/about_cp.php
Bethany Christian Services – LifeLines post-adoption resources - https://www.bethany.org/adoption/post-adoption-support
MyChild at CerebralPalsy.Org - http://cerebralpalsy.org/about-cerebral-palsy/what-is-cerebral-palsy/
ComeUnity - Books for parents of children with cerebral palsy - http://www.comeunity.com/disability/cerebral_palsy/cpbooks.html
Early Intervention Support - http://day2dayparenting.com/cerebral-palsy/