My sister, Becky, and I are a lot like most siblings: We’re alike in many ways but also have major differences. We share a love of fine dining, shopping, music, movies and going to the theater. We both have a very dry sense of humor and still like to tease each other even though we’re both in our 30s.
We have our differences, too, just like other siblings. Becky’s fashion-forward wardrobe is color coordinated in her closet; I’m more of a jeans and T-shirt kind of gal. She calls herself organized; I say she’s a neat freak. She says I’m messy; I consider myself domestically challenged. Our list of similarities and differences goes on, but that’s where our similarities to most sisters ends.
When I visit Becky and we get ready to go out for dinner, I dress her. At the restaurant, I feed her. If she needs to use the bathroom, I assist her. Becky was born with cerebral palsy.
Cerebral palsy, widely known as CP, is a condition that affects muscle coordination and body movement. CP is caused by brain damage that may occur before, during or after birth as well as during infancy. Becky’s CP was proved in a court of law to be a result of medical malpractice when she was born 32 years ago. However, it is now believed that less than 10 percent of CP cases are caused by problems during delivery.
According to the March of Dimes, causes of cerebral palsy include certain infections in the mother, premature birth, insufficient oxygen to the fetus, blood diseases, severe jaundice or other birth defects including genetic diseases. Research continues to be done on cerebral palsy and its causes. It is not a progressive condition, meaning it does not get worse over time.
United Cerebral Palsy, the leading organization and source for information about CP, estimates the following:
- Approximately 764,000 children and adults in the United States have one or more symptoms of CP.
- About 8,000 babies and infants are diagnosed with CP each year, and about 1,200 to 1,500 preschool age children are also diagnosed.
- About 70 percent of children have congenital cerebral palsy, which results from brain injury in utero, and an additional 20 percent are diagnosed with congenital CP because of a brain injury during birth.
- About 10 percent of individuals with CP acquire it after birth due to brain damage such as infection or head injury.
There are three distinct types of CP, according to United Cerebral Palsy:
- Spastic cerebral palsy means the muscles are stiffly and permanently contracted. About 70 to 80 percent of individuals with CP have this type.
- Athetoid (also known as dyskinetic) cerebral palsy is characterized by uncontrolled, slow and writhing movements. Approximately 10 to 20 percent of individuals with CP have this type.
- Ataxic cerebral palsy is rare and affects an individual’s sense of balance and depth perception. Five to 10 percent of individuals with CP have this type.
Some people may have a mixed form of symptoms, the most common being a combination of spastic and athetoid movements. Other symptoms may include speech, swallowing and mobility difficulties. Sometimes a person with CP may have mental retardation, seizures or hearing and vision problems. Doctors typically diagnose CP by testing an infant’s motor skills and reflexes and looking for symptoms of abnormal muscle tone, slow development and posture.
An individual with CP may face minor or major challenges depending on which parts of the brain are damaged and the type and severity he or she has. Becky has a severe combination of athetoid and spastic CP. She is unable to dress, feed or bathe herself. She can grasp a pencil but needs help writing out the letters of her name, as she can’t control her hand movements. Becky can speak, but slowly. My family and our close friends can usually understand her speech, but someone just being introduced to her for the first time may not.
Becky can’t walk on her own and will never get married or have children. Other individuals with CP have much milder symptoms and are able to live with complete independence.
There are no specific treatments available to cure cerebral palsy itself. However, depending on the specific needs of someone with the condition, speech, occupational or physical therapy – or a combination of all three – can be very helpful. Others may have surgery, take medication, wear leg braces or use a cane or wheelchair. Adaptive technologies such as specialized computers that can help someone with severe speech difficulties are also available. It’s important to discuss these options with your child’s doctor so you can choose what’s best for your child and her particular issues. As your child grows, you can find out about specific resources for independent living, counseling and vocational programs and training in your community.
It’s important for parents to understand that CP is not progressive and that there are many options available for therapy and medication. My mother suggests that parents of children with CP “hang in there and do as much as you can while they’re young. Early intervention is important, and the sooner you start physical, occupational or speech therapy, the better.”
How will the condition affect the individual’s life going forward into adulthood? Depending on the severity of CP, adults with the condition may be able to hold jobs, get married and have families or live independently. Becky has lived in her own home for nine years and works with a team of aides who provide care.
Financial considerations and plans for the future need to be taken care of by the primary caregiver of the individual with CP. I know the day will come when I will be responsible for organizing my sister’s care, medical issues and finances when my parents are no longer around. Sometimes the thought of it is stressful, but I am grateful to have had these discussions now so I know what to do.
I certainly wish that my sister wasn’t born with cerebral palsy. But the older I get, the more I cherish the gift Becky has given my family and me. Becky has taught me sensitivity and strength. My sister has also made a huge impact on my sons. They have known since they were babies that “Auntie Becky” can’t walk or talk like we can and needs some special help. I am beyond proud that my boys have a strong appreciation for people with disabilities that defies their young ages.
Perhaps, most importantly, Becky has taught us patience and respect and to focus on what a person can do instead of what she cannot. I will be forever proud that we are sisters.
For more information about Cerebral Palsy, visit the following websites: