Dictionary For Dads

Cerebral Palsy is a phrase used to describe a group of persistent conditions affecting body movement and muscle coordination. It is caused by damage to one or more particular areas of the brain occurring before or after birth. Cerebral Palsy describes a group of permanent disorders of the development of movement and posture, causing activity limitation that are attributed to non progressive disturbances that occurred in the developing fetal or infant brain. 

Cerebral" refers to the brain and "Palsy" to a disorder of movement or posture.  If someone has cerebral palsy it means that because of an injury to their brain (cerebral) they are not able to use some of the muscles in their body in the normal way (palsy). Children with cerebral palsy may not be able to walk, talk, eat or play in the same ways as most other children.

Cerebral palsy is neither progressive nor communicable. It is also not "curable" however education, therapy and Assistive technology can help an individual with cerebral palsy lead a productive life.

Cerebral palsy is characterized by an inability to fully control motor function, particularly muscle control and coordination. Depending on the type of Cerebral Palsy the child has they may experience impairments with a host of other physiological disorders such as; vision, hearing or speech impairment, seizures and impaired mobility.

According to the United Cerebral Palsy Association, more than 500,000 Americans are currently living with Cerebral Palsy (2009). Cerebral Palsy usually is diagnosed by age three.

Spastic Cerebral Palsy:  This is the most common type of Cerebral Palsy.Seventy five percent of Cerebral Palsy cases diagnoses are of the Spastic type. Spastic cerebral palsy symptoms include increased tone, or tension, in a muscle. Normal muscles work in pairs; when one group of muscles contract, the other group relaxes. This allows uninhibited movement in the desired direction. Due to complications in brain-to-nerve-to-muscle communication, the normal degree of muscle tension is disrupted. Muscles affected by spastic cerebral palsy become active together and block effective movement. This causes the muscles in spastic cerebral palsy patients to be constantly tense, or spastic. Cerebral palsy can be classified by the way it affects movement or by the number of limbs it affects. These classifications can be combined to describe severe conditions such as spastic diplegia cerebral palsy. In spastic diplegia cerebral palsy all four limbs are affected; both legs, as well as mild affects in the arms are present.

Athetoid Cerebral Palsy (also known as dyskinetic cerebral palsy) affects 10 to 20 percent of people with the disorder. Athetoid cerebral palsy is characterized by fluctuations in muscle tone between being too tight and too loose. The muscle tone fluctuation often causes spasms. Athetoid cerebral palsy usually affects the whole body instead of a particular region. Interestingly, a large percentage of people with Athetoid Cerebral Palsy have above average intelligence. The main characteristic of Athetoid Cerebral Palsy is uncontrolled, slow, writhing movement of the limbs. Sometimes the muscles of the face, tongue and throat are affected, causing grimacing or drooling. Patients may also have dysarthria, a problem coordinating the muscle movements needed for speech. Uncontrolled movements often increase during periods of emotional stress and are not present while sleeping. Athetoid cerebral palsy sufferers often have a hard time maintaining posture which makes sitting or standing difficult. Additionally, people with athetoid cerebral palsy can have a hard time moving their hands to a certain spot or holding on to objects.

Ataxic Cerebral Palsy:is caused by damage to the cerebellum, which is in the base of the brain. The cerebellum is the control center for balance and coordination and coordinates the actions for different groups of muscles. Ataxic cerebral palsy therefore affects coordination of movement. Ataxic cerebral palsy usually affects all four limbs and the trunk. In addition, Ataxic Cerebral Palsy is characterized by poor or low muscle tone which affects a child in several ways. A child with ataxic cerebral palsy will usually have a wide-based gait, or walk. Because of their poor sense of balance they tend to walk with their feet unusually far apart. In appearance, a person with ataxic cerebral palsy will look very unsteady and shaky. This is due to low muscle tone where the body is constantly trying to counter-balance itself. Another characteristic of ataxic cerebral palsy is tremors, especially when attempting quick or precise movements, such as writing, drawing or buttoning up clothing.

When an infant or child is diagnosed with Cerebral Palsy, the family's lives are changed forever. Confronting and living with the challenges brought about by disability requires families to reach out for help, gain an education become an advocate and adjust to the changes in the dynamics of the family system. The first thing that a parents should do is learn the law as it relates to children with disabilities and education.The Individuals with Disabilities Education Act IDEA is a law that offers opportunities for children with disabilities to become productive members of society.

Services for children with disabilities are now mandated from birth to 21 under the Individuals with Disabilities Education Act (IDEA). IDEA requires that families be involved with the planning, development and implementation of services throughout a child's life.

For infants and toddlers, IDEA requires that a state-designated agency (varying from state to state, e.g., Department of Health, Department of Education). This agency is responsible, along with the family and other relevant professionals, for the development of an Individualized Family Services Plan (IFSP). The services specified in this plan must be provided in the child's natural environment. A natural environment is defined as the home and community setting in which children without disabilities participate. This would include childcare centers.

Starting at age three, Individualized Education Programs (IEP) are developed for children who previously had an IFSP. The transition from the IFSP (infants and toddlers) to the IEP should involve all individuals who were and will be involved in the child's new program. The IEP focuses on long term goals and objectives for educating the child. Children with disabilities (including infants and toddlers) are entitled to receive special education and related services based on their individual needs, which are determined by an assessment and evaluation. A multidisciplinary team, including the child's parents, develops the IEP. If a child needs a related service (e.g., occupational therapy, language therapy, assistive technology) to receive a free appropriate public education, it must be provided at no cost to the parents.

Each state has at least one federally funded Parent Training and Information Center (PTI). These centers are designed to provide information and training to parents concerning their child's right to a free appropriate public education.

Because the goal of education is to prepare a child for a productive adult life, IDEA requires that, at age 14, parents and school personnel begin considering and implementing a course of study that focuses on life after high school. At age 16, a school is required, with parent and student input, to develop a Individualized Transition Plan as part of the IEP. All state agencies that will be providing services to the student after high school are required by IDEA to be involved in the planning process.

According to the United Cerebral Palsy association, it is essential that the management and intervention begin as soon as Cerebral Palsy is diagnosed in a child. Early Intervention Programs (EIP) provide a  wide range of services designed to intervene at the early stages of an infant disability. Services can include physical therapy, speech therapy, special instruction, occupational therapy, health services; family training, counseling, and Assistive technology services. Early Intervention is critical for children with Cerebral Palsy because the young brain has a greater capacity to be molded with appropriate training.  In the first few years of life a child has the greatest ability to learn and develop.  Through early intervention, infants and young children with cerebral palsy can develop more normal function, including posture, muscle tone, and movement. They can be taught movements helpful for feeding, bathing, and dressing themselves. They also will be exposed and trained on assistive technology.

 Assistive technology for people with Cerebral Palsy can aid such things as lack of motor function, balance, speech, and many other problems children with cerebral palsy face daily.  The social worker should ensure that the child, parents, and school board are exposed to these technologies and any  proven alternative modes of therapies that are beneficial for children diagnosed with Cerebral Palsy.

A team of health care professionals works with the child and family to identify the child's needs and create an individualized treatment plan to help the child reach his or her maximum potential. The team is generally coordinated by one health care professional and may include pediatricians, physical medicine and rehabilitation physicians, orthopedic surgeons, physical and occupational therapists, speech/language pathologists, social workers and psychologists. 

 Modes Of Therapy

Physical Therapy The child should begin physical therapy soon after diagnosis. Physical Therapy improves motor skills (such as sitting and walking) and muscle strength and helps prevent the shortening of muscles that limits joint movement. Sometimes braces, splints or casts are used along with physical therapy to help prevent this and to improve function of the hands or legs.

Medications are sometimes are recommended to help spasticity or to reduce abnormal movement.

Occupational therapists work with the child on skills required for daily living, including feeding and dressing.

Speech Therapist Children with speech problems work with a speech therapist or, in more severe cases, learn to use a computerized voice synthesizer that can speak for them.

Assistive Technology is a group of devices that can be used to give people with cerebral palsy more independence. These devices have become an important tool for children and adults with cerebral palsy in terms of communication, mobility, education, recreation, socialization and employment.

Mechanical aids are available today such as;walkers, positioning devices (to allow a child with abnormal posture to stand correctly), customized wheelchairs, and specially adapted scooters and tricycles.

Play Therapy: Play is an essential activity for all children. This is where real learning begins. Because some children with cerebral palsy are more limited in their physical ability, it may not be easy for them to engage in spontaneous play teachers and assistants need to be ready to give the child any assistance they may need to help them enjoy playing. Play therapy not only helps to release stress, it can also aid their development, and in some cases speed it up. Playing increases hand-eye coordination, can aid in developing fine motor skills, and as they get older, can aid in developing their gross motor skills

Behavior/Psychological Therapy: The social worker in an school should work one on one with the child. In this collaboration the child and social worker will devise measurable goals and objectives that address the social and emotional goals for the child. The social worker will encourage the child through positive reinforcement and accolades such as stars or certificates. Through this collaborative effort the child will be directed towards achieving goals such as; interacting in three classroom discussions through Assistive technology two times a week, scheduling playtime during recess with one child three times a week or expressing feelings in individual session one time a week. This will enable the child to experience a sense of accomplishment. Furthermore, it will teach the child how he/she can engage in behavior that will have a positive effect on their social and academic situation.

The process of developing an Education and Intervention plan for a child with Cerebral Palsy in a school begins with an assessment of the child's needs. An important part of the assessment is to administer the Vineland Adaptive Behavior Scale. The Vineland Adaptive Behavior Scale is an assessment tools that is used to help diagnose and evaluate the special needs of students. The focus of this particular test is the measurement of the adaptive behaviors including the ability to cope with environmental changes, learn everyday skills and to demonstrate independence. The Vineland Adaptive Behavior Scale measures five domains. These are Communication, Daily Living Skills, Socialization, Motor Skills, and Maladaptive Behaviors. If they are assessing a child who is entering an Early Intervention Program which is the recommended course of Intervention for children with Cerebral Palsy the Vineland Adaptive Behavior Scale (VABS) for infants and toddlers should be the assessment tool. The Vineland Adaptive Behavior Scale (VABS) for infants and toddlers is called the Vineland SEEC Scales. The SEEC stands for Social-Emotional Early Childhood. Similar to the original VABS, the Vineland SEEC was developed by Sara S. Sparrow, Domenic V. Cicchetti and David A. Balla. But, unlike the original VABS that is used asses the needs of children from preschool-age and older, the Vineland SEEC was specifically developed to asses the needs of children from birth to six years old. the SEEC measures the infant/child’s ability in only three areas; Interpersonal Relationships, Play/ Leisure Time and Coping Skills.

Vineland Break Down

   1. The Communication Domain evaluates the receptive, expressive, and written communication skills of the child
   2. The Daily Living Skills Domain measures personal behavior as well as domestic and community interaction skills
   3. The Socialization Domain covers play and leisure time, interpersonal relationships, and various coping skills
   4. The Motor Skills Domain measures both gross and fine motor skills
   5. Maladaptive Behavior is an optional part of the assessment test. It is used when measuring obvious undesirable behaviors.

The importance of a comprehensive assessment can not be overstated for every special needs child entering a school. It is crucial that a school not rely solely on chart information or generalizations of any one disorder or diagnosis. The school social worker should asses the child's needs, the family structure and dynamics, supportive services in place, schools' ability to serve this child and address any obstacles in the school infer structure or system that may prohibit or interfere with the child's ability to be educated and socialized.  

After the assessment  the school should collaborates with the school district, parents and others professionals involved in the child's education and treatment to develop an Individualized Educational Plan (IEP). The IEP should state the specific needs of the child with Cerebral Palsy, special instructions, specific services that will be provided and by who. The special services may be as simple as allowing extra time to travel between classes or as extensive as individualized instruction, adapted classroom equipment, and special testing procedures. s' process of developing an Intervention plan for a child with Cerebral Palsy begins with an assessment of the child's needs. An important part of the assessment is to administer the Vineland Adaptive Behavior Scale. The Vineland Adaptive Behavior Scale is an assessment tools that is used to help diagnose and evaluate the special needs of students. The focus of this particular test is the measurement of the adaptive behaviors including the ability to cope with environmental changes, learn everyday skills and to demonstrate independence. The Vineland Adaptive Behavior Scale measures five domains. These are Communication, Daily Living Skills, Socialization, Motor Skills, and Maladaptive Behaviors. If they are assessing a child who is entering an Early Intervention Program which is the recommended course of Intervention for children with Cerebral Palsy the Vineland Adaptive Behavior Scale (VABS) for infants and toddlers should be the assessment tool. The Vineland Adaptive Behavior Scale (VABS) for infants and toddlers is called the Vineland SEEC Scales. The SEEC stands for Social-Emotional Early Childhood. Similar to the original VABS, the Vineland SEEC was developed by Sara S. Sparrow, Domenic V. Cicchetti and David A. Balla. But, unlike the original VABS that is used asses the needs of children from preschool-age and older, the Vineland SEEC was specifically developed to asses the needs of children from birth to six years old. the SEEC measures the infant/child’s ability in only three areas; Interpersonal Relationships, Play/ Leisure Time and Coping Skills.

Vineland Break Down

   1. The Communication Domain evaluates the receptive, expressive, and written communication skills of the child
   2. The Daily Living Skills Domain measures personal behavior as well as domestic and community interaction skills
   3. The Socialization Domain covers play and leisure time, interpersonal relationships, and various coping skills
   4. The Motor Skills Domain measures both gross and fine motor skills
   5. Maladaptive Behavior is an optional part of the assessment test. It is used when measuring obvious undesirable behaviors.

The importance of a comprehensive assessment can not be overstated for every special needs child entering a school. It is crucial that a school not rely solely on chart information or generalizations of any one disorder or diagnosis. The school social worker should asses the child's needs, the family structure and dynamics, supportive services in place, schools' ability to serve this child and address any obstacles in the school infer structure or system that may prohibit or interfere with the child's ability to be educated and socialized.  

Following the assessment the school should collaborates with the school district, parents and others professionals involved in the child's education and treatment to develop an Individualized Educational Plan (IEP). The IEP should state the specific needs of the child with Cerebral Palsy, special instructions, specific services that will be provided and by who. The special services may be as simple as allowing extra time to travel between classes or as extensive as individualized instruction, adapted classroom equipment, and special testing procedures.

Social Development How Cerebral Palsy Affects Development

Children with Cerebral Palsy have varying degrees of associated medical problems and physical disabilities which can impede on social development. These include seizures, speech disorders, visual impairments, hearing loss, gastro esophageal reflux, speech problems and drooling. These associated disorders along with various mobility issues depending on the type and severity of the Cerebral Palsy make it very challenging for the parents, teachers, classmates, school administrators and the social worker to provide an environment that fosters cognitive growth and social interaction for the child.

Many times due to lack of training and education, other children and staff alike falsely categorize children with Cerebral Palsy as being mentally retarded. This is largely due to the fact that cerebral palsy often limits a child's ability to communicate verbally. Therefore it is often difficult for them to demonstrate their cognitive abilities without the assistance of technology. However, less than two thirds of all children with cerebral palsy have any cognitive delay. The Special needs child in this situation becomes very vulnerable to other children who may shy away from them,bully them, or make fun of them which negatively impacts their social/emotional development.

Emotional Development

Physical disabilities can prompt social and emotional difficulties for children and adults alike. In the case of Cerebral Palsy, intellect is often at par or higher but the ability to demonstrate it verbally or non verbally is impaired. Children and adults tend to evaluate themselves more on what they are unable to do  rather than on their substantial abilities. Therefore, Cerebral Palsy children are at high risk to experience mood disorders and often lack skills to manage frustration, sadness, loneliness, anger or depression.

The origin of depressed feelings is often characterized as being angry at oneself or at a situation over which one has little or no control.  Self esteem is based on feeling confident or sure of one self’s ability to compete and survive in the environment. One gains confidence and a sense of satisfaction through positive reinforcement and achieving goals and Cerebral Palsy Children are no different. 

Accessibility

Children with cerebral palsy have limited use of their arms due to the dis-coordination of their neural motor control and stiffness of their joints. The stiffness results from spasticity, the involuntary muscle tightness that occurs in about two-thirds of children with cerebral palsy. These difficulties interfere with the way these children walk, play and perform the manual tasks needed for gaining and education. Their ability to engage in the classroom is often dependent on Assistive technology to assist them with their motor and communication skills. In many instances schools and community recreation centers are not suitable or accessible for children with cerebral palsy.These can be due to lack of wide enough doorways for wheel chairs, classroom size, ramps, bathrooms, lack of Assistive technology or proper evacuation routes for individuals with disabilities. As a society we need to advocate for these children on every level because ignorance is no longer an excuse.