By: Chioma Umeha
Mrs. Alaba Gbadebo, is Co- founder, Benola – a cerebral palsy initiative, and the wife of Air Vice Marshal (AVM) Femi Gbadebo (Rtd), OFR, founder and Chief Executive Officer, of the initiative. Mrs. Gbadebo, is mother of 17-year-old boy, Olaoluwa, who is living with cerebral palsy. Recently, when Benola marked the 17th birthday of Olaoluwa, She shared her experience with some journalists concerning cerebral palsy and its management. CHIOMA UMEHA (Health Editor) was there. EXCERPTS:
|Mrs Alaba Gbadebo|
Many describe cerebral palsy as a deadly disorder, describe how it manifests based on your experience?
Cerebral Palsy is the most common childhood physical disability. It is a permanent physical condition that affects the movement. It describes a group of disorders of the development of the movement and posture, causing activity limitation and that are attributed to non-progressive disturbances that occurred in developing foetal or infant brain. The incident in developed countries is approximately 2.25 per five thousand births. Cerebral palsy is a non-progressive disorder. While severity varies widely, cerebral palsy ranks among the most costly congenital conditions to manage.
Cerebral palsy is an “umbrella term” in that it refers to a group of different conditions. It has been suggested that no two people with CP are alike even if they have the same diagnosis. Cerebral palsy is divided into four major classifications which describe the different movement impairments. These classifications reflect the area of brain damaged. The four classifications are: Spastic; Athetoid; Ataxic and Mixed. Spastic cerebral palsy is further classified by topography, dependent on the region of the body affected. These typography classifications include: hemiplegia in which one side is being more affected than the other; diplopia in which the lower body is being more affected than the upper body and quadriplegia in which all four limbs are affected equally. Cerebral palsy cannot transfer from one body to another. So people should look after these patients with affection and not hatred or sarcasm. Many scholars acknowledge that ataxic, Athetoid, spastic and mixed are the relevant forms of cerebral palsy; however, various conditions and subtypes may exist. Also, a common misnomer is that CP causes mental retardation when in fact; only individuals whose brain damage is associated with the hippocampus actually had these difficulties. While learning difficulties and CP may occur, it is common for individuals with CP to have normal lives when their lives are managed coherently and effectively. This means that if a person with CP can focus on scholastic achievement or improving social skills, rather than on when they will get their next treatment, that individual is going to fare better than when the necessary assistive technology is not available.
Why does CP occur?
Since the last several decades, there have been considerable advances in obstetric and neonatal care. Health experts care for unborn babies and premature infants better than before. However, despite these important advances in medical care, up to 1 in 250 children are born with some form of cerebral palsy (CP).
Are there genetic forms of cerebral palsy?
Many children are thought to develop CP as a result of unavoidable complications during delivery or related to extreme prematurity or maternal infection. For those without this history, an MRI scan can provide valuable clues that help explain a child’s CP (showing a stroke that occurred during development or a region of the brain that didn’t form correctly, for example). Although many children have a readily identifiable cause for their CP, for most children the cause of their CP is something of a mystery. Researchers have recently, shown that for a substantial proportion of children with CP, their condition may be genetic. More recently, a research group has identified a new gene that leads to CP when mutated. How substantially single gene mutations contribute to CP is controversial and subject of ongoing research. However, there are limits of current knowledge. Despite recent advances in genetic technology and capabilities, there is still a lot of room in the knowledge about the role of genetic factors in a given child’s CP.
If CP doesn’t run in one’s family, could ones child’s condition still be genetic?
For many genetic diseases, such as cystic fibrosis, there is no prior history in the family. Instead, both parents are carriers of the condition, and each of their children has a 25 per cent chance of inheriting the disease. It is rare for several family members to have CP. Studies of families with multiple children with CP has formed the basis of what we know about CP genetics today.
What are the unique emotional challenges of accepting a child that has been diagnosed of CP?
The developmental challenges which a child with CP faces vary tremendously. Even at the time of diagnosis it’s not necessarily clear what individual challenges your child may or may not face. And what you hear may not even prove accurate. This means that as a parent it may be unclear what you will need to accept. Parents of children diagnosed with CP respond with varying emotional state of hope, despair and relief. It is usually tough and confusing. Several parents suffer emotionally for long because what they are being asked to accept may be challenging. The ground levels out with time. As your child gets older, you learn more about yourself, your child, this journey, and you become better equipped to weather the storms. You will look back and lift others up who are losing their balance.
How do you explain disability to a child?
Whether you are explaining a disability to a child who has one or to a non-disabled child, the following key concepts should be kept in mind. Compassion: Show a child you fully understand what a hurtful thing a disability can be. Communication: Explain as much as you possibly can about the disability so a child does not become frightened by the unknown. Comprehension: Make sure a child understands that the disability is never the child’s fault. Competence: Convey the sense that even though a disability is very hard to deal with, a child with a disability will make progress and learn to do new things. It is important to know how to address a child with a disability and those without a disability. For instance, when speaking to a child between two and four with a disability, you could say: “We don’t know why, but sometimes children are born without everything their bodies need, and that’s what happened to you. That means you’re going to have to work harder and we’re going to work hard to help you.” For those between the ages of five and eight with a disability, you should try to empathise with them. For instance, you could say the following: “It’s really tough when your body can’t do everything you want it to do. It’s not fair that you have to work so hard to make your body do what you want. But everyone has some activities that are easy for them, and some that require more effort. You have this problem, but you’re lucky to have lots of talents, too.” For those between the ages of nine and twelve with a disability, you should try to empathise with them. For instance, you could say the following: “It’s a bad incident for you to be born with a disability that makes things harder. But remember your abilities, too and work to strengthen them. It’s natural sometimes to feel angry but try not to give up.” However, if you are speaking to a child between the ages of two and four without a disability, try and encourage them to identify with others with disability. You could explain thus: “Most children like you are born with everything they need, but sometimes children are born without everything they need. Sometimes they need crutches or wheelchairs or braces to help them do what you do naturally.” If you are speaking to a child between the ages of five and eight without a disability, you could try to provide details for them on why they have to have compassion with others with disability. For instance, you can appeal to their conscience this way: “Children are different and have different strengths as well as things that are hard for them. Some things that are easy for you to do are very difficult for other children to do. It takes a lot of courage for children with physical disabilities to keep trying and working at it.” For those between the ages of nine and twelve without a disability, try and encourage them to support their peers with disability. For example, you can tell them this: “Whenever you see someone with a disability, remember that even though they are having a hard time, they are still children who need friends and understanding.
Explain how assistive technology and supportive living can help those living with the condition?
Assistive Technology is a generic term for devices and modifications (for persons or within a society) that help overcome or remove a disability. The term is also used to describe any device, software or resource that can increase skills and maximize an individual’s potential due to any of the following: economic limitations; language barrier; cultural differences; educational barriers and the disability itself. Often, there are technologies available that can help increase the opportunities of individuals with developmental disabilities and enhance the quality of their life and that of their families. However, adults, as well as families with children who have special needs, especially those living in developing countries often have difficulty accessing conventional resources. The first recorded example of the use of a prosthesis dates to at least 1800 BC, followed by the wheelchair which dates from the 17th century. Other examples are standing frames, text telephones, accessible keyboards, large print, and Braille as well as speech recognition software. Apart from these, people with disabilities often develop personal or community adaptations, such as strategies to suppress or hide their limitations in public, or sign language that is used in deaf communities. Since personal computer has become more ubiquitous, more organizations are urged to collaborate develop software and hardware to make computers more accessible for people with disabilities, with some of them being specifically designed for people with disabilities, such that others which were not specifically developed for people with disabilities, can be used to increase accessibility.
What does assistive technology solutions involve?
Assistive technology solutions vary from the simple to the complex, but they all tend to have one thing in common assisting people with a wide range of disabilities and impairments to overcome or better cope with their limitations and thereby, achieve greater independence. Given that each solution is individualized to meet the user’s unique needs, it can take both time and an equipment trial period to find the appropriate solution and one that offers the most benefit. However, this process can be greatly enhanced by an individual assessment/consultation and training.
What does ‘supported living’ entail?
Many definitions of the term ‘Supportive or Supported Living’ abound, but the one that best describes the term is this one by the State of Oregon in the United States of America. ‘Supported living’ is defined as persons with disabilities living where and with whom they want, for as long as they want, with the on-going support needed to sustain that choice. Direct support services can be provided by paid staff, including live-in roommates or boarders, paid neighbours and hired attendant. Experts, friends, families, and other “informal supports” can also assist people to live in their homes.
How can public-private partnership help researchers and address cerebral palsy?
Parents and advocacy groups are urged to support research on the genetic basis of CP. CP research has historically been underfunded when compared to other childhood diseases. Parents and families can help reverse this inequity by supporting organizations whose agenda focuses on needed research. You or your child can participate in the Cerebral Palsy Genetic Research Collaborative.
This story was published in Newswatch Times on June 27, 2013.