EXPECTATIONS OF A CHILD WITH CEREBRAL PALSY 

When it comes to expectations and questions of what the future holds for the child with cerebral palsy, expectations should be a combination of optimism and realism, just as one would with any child. Suppose, for example, that the parent of a three year old without cerebral palsy has hopes and expectations that the child will go to college and law school, enter politics, and eventually become President of the United States.

Some of these expectations are realistic and are likely to be met, while others are extremely unlikely to occur to the point of being clearly unrealistic. Regardless of whether a child has cerebral palsy, however, the parent needs to care for the child as a three year old and not as a college student or as a politician. It is equally important for the parent of a child with cerebral palsy to understand the child's present and future abilities. That parent's expectations are also probably a combination of realistic and unrealistic goals for the child with cerebral palsy, but in time, with professional help, the parent will develop a set of mostly realistic expectations and it is to these expectations that the parent, child, and professional will dedicate their effort.

Occasionally, difficulties in communication arise when the parents, educators, and medical care providers discuss present abilities of a child with cerebral palsy. Parents, educators, and medical care providers should work on communication skills regarding a child with cerebral palsy, and in this way help the child function at his or her maximum ability. An attempt to define future expectations is usually most important in the teenage years and beyond, when function of the child with cerebral palsy is better defined and the future looks more clear to everyone involved.

PHYSICIAN AND PARENTAL COMMUNICATION

Parents are naturally concerned when their newborn child has problems, and physicians need to evaluate the child's condition and prognosis as well as they can. For example, evidence of a bleed in the child's brain should be discussed with parents, although the outcome of such a bleed cannot be predicted. The diagnosis of cerebral palsy cannot be made at birth and, most assuredly, the extent and severity of involvement that an individual child might eventually have is impossible to assess at birth. Many neonatologists, aware of the interaction that generally occurs between the newborn and parents, avoid discussing the child's problems in detail because they want to permit this interaction to take place.

The presumption of a bleak future for a child sometimes causes parents to withdraw from the child and this can have a significant negative effect on the child. Physicians usually communicate their concerns in terms of the child's symptoms, such as muscle problems, and prepare parents for the possibility of neurologic damage. Clearly, it is part of the physician's role to inform parents, but the variability of outcome makes it virtually impossible for the physician to predict the future, and so the physician must weigh the need to inform (and the imprecision of information) against the need for the parents to have hope for, and to become close to their child.

SHOULD TREATMENT OF CEREBRAL PALSY BE AGGRESSIVE?  

Many times when a child is a few years old and severely disabled, parents begin to wonder whether treatment should have been less aggressive than it was. Given the tremendous uncertainties in outcome, physicians and parents usually choose to treat newborns and preserve life with the hope that the outcome will be a good one. There are clearly exceptions, such as when the baby has a known chromosomal defect (such as trisomy 18), where the poor prognosis is known and where very aggressive treatment may not be used.

However, in the majority of cases the information regarding ultimate outcome is not available, and families and physicians do the best they can with he limited information they have. Often the prognosis is based on information from studies of a large number of babies with a similar birth weight. The chance of an individual baby having cerebral palsy or mental retardation(expressed as a percentage) is derived from these studies. Nevertheless, it is impossible to know whether an individual infant will fit into the 70-90 percent group that has a good outcome or the 10-30 percent group with a poor outcome.

The role of the physician is to gather as much information about the child's condition as possible and to convey this information to families along with the best information available about chances for outcome. The role of the family is to help in the decision-making process when there are decisions to be made about further aggressive treatment, though ultimately it is the physician's responsibility to decide what should or should not be done. Most physicians will take into consideration a family's wishes, but physicians cannot give up their legal and moral obligation to do what is best for their patient, nor can a physician withhold treatment without the family's permission.

The problem is trying to figure out what is best. At the time the decisions must be made it is often very difficult to know what will ultimately be best. A decision to treat aggressively usually involves the use of sophisticated equipment, although availability of such technology does not mean that it must always be used, and there are clearly times when it is more humane to withhold or withdraw aggressive treatment. These are never easy decisions to make. Clergy, social workers, ethicist, and other health care workers who have come to know the patient and family often help in making a decision about what is best.

DEFINITION AND TERMINOLOGY OF CEREBRAL PALSY 

Cerebral palsy is the term used to describe the motor impairment resulting from brain damage in the young child regardless of the cause of the damage or its effect on the child. Impairment is the correct term to use to define a deviation from normal, such as not being able to make a muscle move or not being able to control an unwanted movement.

Disability is the term used to define a restriction in the ability to perform a normal activity of daily living which someone of the same age is able to perform. For example, a three year old child who is not able to walk has a disability because normal three year old can walk independently. Handicap is the term used to describe a child or adult who, because of the disability, is unable to achieve the normal role in society commensurate with his age and socio-cultural milieu. As an example, a sixteen-year- old who is unable to prepare his own meal or care for his own toileting or hygiene needs is handicapped.

On the other hand, a sixteen-year- old who can walk only with the assistance of crutches but who attends a regular school and is fully independent in activities of daily living is disabled but not handicapped. All disabled people are impaired, and all handicapped people are disabled, but a person can be impaired and not necessarily be disabled, and a person can be disabled without being handicapped. In the past there has been a disturbing lack of awareness and sensitivity, both among the general public and in literature, with respect to the words used when people with disabilities are discussed.

But an increasing amount of attention is being paid to such language in our society along with issues of education, employment, and public access for disabled individuals. Certainly, the use of obviously pejorative expressions has always been inappropriate, and the formerly accepted practice of referring individuals by their disability ("the epileptic," "the spastic," "the retarded child") is no longer acceptable.

While it may take years for our language to catch up with our changing views, the current acceptable terminology stresses the individual person and then mentions the disability that person has, therefore, we refer to a girl with spastic diplegia or a boy with mental retardation. Clearly, this language acknowledges that there is much more to this individual than his or her disability. Other terms that have recently come into use represent an even more enlightened view.

We have chosen to use language that reflects the appropriate current societal goal of employing respectful terminology and that also reflects our concern with presenting information in a way that can be understood by the general reader. For example, the child who is mentally challenged, rather than the child who is mentally retarded.