A lifelong disability can make a tremendous impact in the way someone lives their life. During the month of March, we join the world in honoring Cerebral Palsy Awareness Month to help promote advocacy, knowledge, and a better understanding of what people with cerebral palsy go through every day.
What Is Cerebral Palsy?
Cerebral palsy stems from a group of disorders that affect an individual’s mobility, balance, and posture. Cerebral indicates the brain’s involvement, while Palsy implies weakness or issues with muscle function. According to the CDC, “CP [cerebral palsy] is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles.” The organization explains that cerebral palsy can occur before birth, during birth, within a month after birth, or even during the first years of development in a child’s life.
In the United states, around 10,000 babies are born with cerebral palsy, between 1,200 to 1,500 school-aged children are diagnosed with cerebral palsy each year, and almost 764,000 children and adults combined have at least one symptom of cerebral palsy. Risk factors include premature births, multiple births, and maternal infections.
There are four distinct types of cerebral palsy:
- Spastic Cerebral Palsy
- Dyskinetic Cerebral Palsy
- Ataxic Cerebral Palsy
- Mixed Cerebral Palsy
Doctors have categorized each type based on specific movement impairments. They can include, stiff muscles (spasticity), uncontrollable movements (dyskinesia), and poor balance and coordination (ataxia). Those with mild cases are able to walk with special equipment, while those with more severe cerebral palsy are unable to walk at all and require lifelong care.
Living With A Disability
Movement, communication, pain, eating and drinking, saliva control, intellectual disability, learning difficulties, and more account for the several ways people with cerebral palsy might find challenge in their daily lives. In fact, the Cerebral Palsy Alliance states:
- 1 in 3 is unable to walk
- 1 in 4 is unable to talk
- 1 in 10 has a severe vision impairment
- 3 in 4 experience pain
- 1 in 4 has epilepsy
- 1 in 2 has an intellectual impairment
Parents are encouraged to be active participants in accommodating for the needs of their child with cerebral palsy. It’s during a child’s developmental stages that can significantly help lessen the challenges and limitations of living with a lifelong disability. For example, daily hygiene activities, eating, and playtime are among the many areas in which parents can play a pivotal role says online publication Cerebral Palsy Guidance. This way, the transition into adulthood is met with confidence after earlier years of independence.
Going to school and supporting inclusivity are also pertinent examples in which parents should remain diligent since, “Children with cerebral palsy are more likely to be excluded from activities and educational opportunities,” the publication writes. It further expresses the need for parents to create an Individualized Education Plan (IEP) within their child’s special education department at school. Ultimately, helping children feel comfortable and empowered to socialize and speak up for themselves are paramount to feeling one with their peers – especially because of the potential threat of bullying.
The Importance Of Advocacy
For children with cerebral palsy, medical costs can be 10 times higher than those for their unaffected peers. It skyrockets to more than 25 times higher for those also experiencing an intellectual disability. The CDC estimates the lifetime cost to care for an individual with cerebral palsy at almost $1 million with, “Combined lifetime costs for all people with CP who were born in 2000 will total $11.5 billion in direct and indirect costs.”
Parents are also subject to stress and symptoms of depression and anxiety. “Particularly those who spend many hours per day providing care and who experience time pressure in relation to caregiving,” Everyday Health says.
Furthermore, siblings of children with cerebral palsy are often “More patient, empathetic, and helpful than many of their peers,” however, “They may be jealous of the amount of attention received by their brother or sister or be fearful about their sibling’s health.”
Simply put, cerebral palsy doesn’t just stop at being a disability or health condition. It has the capacity to weave in and out of all facets of life. While these examples are a mere fraction of what people affected by cerebral palsy go through, they hopefully can help to highlight how it can both directly and indirectly influence the way individuals live.
Cerebral Palsy Guide encourages everyone to become a cerebral palsy ally. Learning more about cerebral palsy and disabled communities at large can inspire a more educated and empathetic society. Acknowledging one’s language, being respectful, donating to cerebral palsy research, and even listening to people with cerebral palsy’s unique stories are some of ways you can advocate awareness.
Making a difference doesn’t need to be complicated. Big or small, we can all do our part to help medically fragile communities, like those living with cerebral palsy, thrive regardless of their circumstance.