Living with Cerebral Palsy
People with cerebral palsy invariably do not know a time when they were normal because the disease reaches its fullness by the time the child is three years old. All they know is life as a disabled person, along with the physical therapy and other therapies that go along with rehabilitation from their disease. They know medications, seizures and difficulty with day to day living. Hopefully, they also know the love of a happy and supportive family, who will help the child learn to grow and develop within their limitations.
Living with cerebral palsy means living with braces most of the time. The braces can be used on the arms or wrists to prevent the hand from forming a fist because of contractures. An elbow brace can be used to prevent the elbow from contracting into a flexed state. With the lower extremities, there may need to be braces to keep the foot from dropping so much that the person has to walk on his or her toes. The braces can be uncomfortable because they are opposing the body's natural tendency to want to flex the arms, wrists, knees and ankles. They almost always need adjusting, which means visits to the rehabilitation center to make sure the brace fits right and has not been outgrown.
Rehabilitation is a big part of a childs life when living with cerebral palsy. There are invariably going to be motor problems, which mean physical therapy to strengthen the muscles and to teach the child to walk, climb and do other things with the upper and lower extremities so that functionality can be achieved. It also means going to occupational therapy so that things like self feeding, writing, and drawing can be taught and maintained as skills. The child can learn to participate in simple activities of daily living, such as preparing food and chores.
Kids with cerebral palsy spend time in things like speech therapy and psychological therapy. They have a higher risk of anxiety and depression than normal kids and they need psychological support to deal with their emotional problems. Some of the kids will have cognitive delays and may be distressed by the fact that they don't learn things the way other kids do. Psychological therapy can help a child with cerebral palsy deal with their personal issues. Speech therapy can be used to help a child with cerebral palsy learn to speak as clearly as possible despite their facial grimaces and problems moving their tongue.
Children with cerebral palsy often live a lot of their lives in a wheelchair or special push chair that allows them to get out and about in the world. They are, of course, limited to the areas accessible to wheelchairs so there are going to be places the child cannot go. Other kids may need to use a walker or other assistive device to help them walk to a limited degree. This takes practice as well as ongoing physical therapy to help make walking possible on an ongoing basis.
Kids with cerebral palsy can suffer from epilepsy as a result of their brain injury. They need to take medication for seizures and they need to have their blood drawn on a regular basis so that the levels of these medications can be determined. In addition, they need to be on medication for muscle spasticity. These medications can help reduce the severe flexion of the muscles but have side effects of being very sedating. Too much antispasmodic medication means the child is tired all the time and can't learn and participate in the activities of daily living.
When living with cerebral palsy, a child may or may not be able to be mainstreamed into a regular school program. This means they have an opportunity to learn the same things as other kids and can advance their education to whatever extent they can, sometimes with the help of an assistant that stays with the child and assists the child. It also offers an opportunity for the child to learn social skills and to make friends.
The reality of cerebral palsy, however, is that these children do not make friends at the same rate as other children. They tend to be more isolated, socially-awkward and depressed than other kids and this impacts their life in a negative way. Because they are visibly different from their peers, they can be the object of bullying and avoidant behavior. Making friends is more than a little bit difficult due to language difficulties and other kids just not understanding what is going on with the affected child.
The cerebral palsy child is often the focus of the family, in part because child takes up so much of the parent's time. This can lead to burn out on the part of the parental caregivers, some of whom need nurse's aide service, especially during the day, for feeding, changing, bathing and managing cares of the affected child. The parents still may experience burn out and may want to send the child away to be cared for. Unfortunately, there are no "homes" for cerebral palsy children with the exception of respite care homes or foster homes that can provide care for the unwanted cerebral palsy child when the family just cant.
Other siblings who live with a cerebral palsy child can also have emotional issues or behavioral issues because they might not receive the same type of attention as does the cerebral palsy child. They can act out behaviorally and they can be dealing with the embarrassment of living with and being associated with a child with a disability. For this reason, it is often a good idea to bring the whole family into family therapy. Issues of all the children in the family as well as the parents can be dealt with and the family can feel more cohesive. This therapy is in addition to the individual therapy that is often recommended for children who have the problem with cerebral palsy. The issues that come up with individual and family therapy will change as the children grow older and experience the normal life challenges superimposed on the challenges of living with cerebral palsy.
HELPLINE: ☎ 1800 633 634
The author of the substantive medical writing on this website is Dr. Christine Traxler MD whose biography can be read here