Children with epilepsy usually are of normal intelligence, but some do not do well academically. When this happens, it is important to find out why. Neurological impairment, frequent seizures, or adverse effects of seizure medicines can affect school performance. If a child is doing well in school, there is no reason to worry about the effects of epilepsy on learning. If the teacher reports problems or if parents become aware that their child's performance is slipping, it may be worthwhile to consider interventions.
First, the problem must be identified. The child may have an attention deficit with frequent distractibility, may be excessively tired from medications or poor sleep, or may have a specific learning disability, which may or may not be related to the epilepsy. Obtaining an educational assessment is the first step after talking with the child's teachers. Parents have the right to request an assessment of their child's problems and needs.
The Individuals with Disabilities Education Act (IDEA), discussed later, provides legal guarantees for educating children with handicaps. The child has the right to be taught in a regular classroom environment as much as possible. The child has the right to be included in social activities and other activities provided by the school. Parents have the right to be directly involved in the process of planning the child's education.
In urban and suburban areas, parent advocacy groups are often active, and school systems recognize the special needs of children with handicaps. In these settings, parents may need to be assertive, a behavior that is not foreign to the urban environment. In contrast, in small rural communities, where there is often only one school system and one education "czar," children with handicaps and their parents face the greatest challenge. Parents are often extremely reluctant to challenge the school personnel and system. Suggestions from parents about their child's special needs or their desire to have their child attend regular (mainstream) classes can be met with indignation and ridicule. Knowing the child's rights under the law and being cautiously assertive can go a long way toward ensuring that the child receives the best possible education.
Most children with epilepsy attend regular classes, even though in some cases they need special aides to work with them. Regular classes offer the opportunity for children with epilepsy and other disorders to enjoy their education and to be in the social environment of other children, most of whom do not have disabilities. By attending mainstream classes, a child with epilepsy will be exposed to a wider array of educational opportunities, will have the chance to develop lasting social relationships with other children with and without disabilities, and will be more likely to feel like a regular child instead of a child with a disability. That is not to deny the existence of the epilepsy, but it emphasizes that most children with epilepsy have the potential to learn and accomplish all the things that other children can.
Regular classes do present potential problems for a child with epilepsy. Children can be cruel. They may pick on or tease the child. Other parents may even forbid their children to play with a child who has epilepsy. If teasing or cruelty becomes a problem, it may be worth asking the school to conduct an educational program so that the children can better understand epilepsy. The "Kids on the Block" puppet show, sponsored by the Epilepsy Foundation (EF) affiliates and other groups, is an entertaining and effective means of educating children about epilepsy. These and other programs help the other children to understand the human and medical sides of a health problem, and through that process, to be more accepting of the child with epilepsy.
Special education programs are designed to meet the special needs of children with disabilities by supplementing or adapting the regular curriculum. Instruction may take place in regular classrooms or in separate facilities for all or part of the day. Students may also be assigned to special programs in physical education, occupational and physical rehabilitation, music education programs, home instruction, or instruction in hospitals and other institutions.
These classes and programs recognize that some students can be educated but have mental or physical impairments that make it essential to tailor their education to their special needs. The variety of special education programs offered by each school system reflects the types and severity of the children's disabilities, the educational emphasis, the student-to-teacher ratio, the funding for quality teachers and equipment, and other factors.
A large majority of children with epilepsy are best served by mainstream classes. Many receive special education services partly or entirely in the regular classroom. Children with frequent and severe seizures who also have orthopedic and emotional problems, on the other hand, obviously need a specialized program, but many children fall between these two extremes. If a child is not doing well in mainstream classes, it is often helpful for parents to meet with the teachers to learn if the cause of the problems can be identified, through special testing if necessary. In addition, consultation with the child's doctor may provide insights. For example, attention deficit disorder may be causing the school problems.
Just because special education is recommended does not mean that it is necessary. In most cases, the recommendation is valid and should be followed, but if parents disagree with the school's placement, they can appeal or seek an outside assessment by a psychologist or neuropsychologist. It may also be helpful for parents to observe the child in mainstream or special education classes to better judge the proper balance.
As discussed further in the next section, schools are required to deliver services in the "least restrictive environment," meaning the regular classroom for as much of the day as possible. Some children do require many special classes or a special school, and emotional issues often arise when children are assigned to special education programs that remove them from the mainstream. Sometimes the children are placed with other children who have severe emotional or behavioral problems and thus provide poor behavioral models. For some parents, the recommendation that their child attend special classes signals that the epilepsy or associated problems are severe and that their child is "not normal."
Children who attend special education programs are aware that they are not in the mainstream, particularly if they were formerly enrolled in regular classes. The word "special" is key. Parents and teachers should emphasize that the child is special, not handicapped, disabled, or less bright. They should not deny or avoid discussing the epilepsy or other disabilities but should emphasize the positive. Parents may wish to discuss with the child why he or she goes to a certain school while brothers and sisters or other children on the block attend another school. The parents can highlight some of the advantages of the special school, such as more teachers, more enjoyable activities, and more children who are like him or her.
The Individuals with Disabilities Education Act (IDEA), formerly known as the Education of All Handicapped Children Act (Public Law 94-142), was passed by the Congress to ensure that all handicapped children receive appropriate education at no cost and in the least restrictive environment. All states that receive federal funds under this Act must follow the rules for identifying, evaluating, and providing services to eligible children between 3 and 21 years of age. Federal funds are also provided to the states to develop early intervention services for infants and toddlers who have physical or mental conditions that are likely to cause developmental delay.
This Act recognizes the special needs of children with disabilities. This group includes children with epilepsy, mental handicap, hearing and visual impairments (including but not limited to deafness and blindness), serious emotional disorders, orthopedic impairments such as scoliosis or immobile joints, autism, traumatic brain injury, learning disabilities, and other impairments that require special education and related services. Children may qualify who have only epilepsy, or epilepsy and another disabling condition such as mental handicap. To qualify for service, however, the presence of a potentially disabling condition is not sufficient. The impairment must adversely affect the child's educational capacity to the degree that special education or related services are required.
In some children, although their epilepsy is not disabling and their intelligence is normal, other problems may require special attention. These include impairments of attention, reading, arithmetic learning, motor skills, memory, and behavior. They are often identified at a young age, permitting early intervention and treatment.
IDEA requires that children with disabilities be educated in the "least restrictive environment." This means that a child has the right to be educated in the classroom with children who do not have disabilities, to the maximum extent that such placement meets the child's educational needs. Most children with epilepsy and other disabilities can be educated in the regular classroom with the use of supplemental aides and services. For example, a child with a disability may attend homeroom and four regular classes but also attend a special tutorial for a reading disorder and physical therapy instead of gym. In this case, the child enjoys the benefits of the mainstream environment and the benefits of special education.
IDEA requires that schools provide all the additional services needed to help children with disabilities benefit from special education. These related services include transportation, audiology and speech therapy, psychological evaluation and treatment, physical and occupational therapy, recreation, therapeutic recreation, social work services, counseling, early identification and assessment of disabling conditions, and medical evaluations. For children with epilepsy, related services include education for teachers and school nurses about epilepsy, how to administer medications, and first aid for seizures. Ideally, this education will be extended to include classmates, because social acceptance may be one of the greatest challenges for children with epilepsy.
IDEA states that a child with disabilities must have a written individualized educational plan (IEP) constructed jointly by the parents and school personnel. The IEP is a written report describing the child's present level of development, the short-term and annual goals of the special education program, the specific educational services the child will receive, the date services will start and their expected duration, standards for determining whether the goals of the educational program are being met, and the extent to which the child will be able to participate in regular educational programs.
The IEP is usually developed during a series of meetings involving the parents, teachers, and representatives of the school district. Because a child with epilepsy has special needs, it is essential that the IEP be written with care to meet those needs. Unless the parents request specific services such as physical therapy, speech therapy, or a barrier-free school, such needs may be overlooked.
Before or during the IEP process, parents should explore available educational programs, including public, private, federal, state, county, and municipal programs. They should observe classes and see for themselves which program is best suited for their child. Parents may bring a spouse, doctor, teacher, advocate, and others for support if they do not wish to attend the IEP meeting alone. They should be aware of the actions of everyone involved in their child's case. They must be assertive and persuasive advocates for their child during the IEP process. This does not mean that all school officials are adversaries, but it does mean that parents are a child's most important advocates; they know their child best.
Parents are entitled to a copy of the IEP, and should request it if it is not offered. Parents also have channels for filing an appeal if they do not agree with their child's plan.
Section 504 of The Rehabilitation Act of 1973 provides education rights for children and adults with disabilities. Although provisions of Section 504 and IDEA overlap somewhat, Section 504 is primarily an anti-discrimination law, which says that it is illegal for any program or activity receiving federal funding to exclude or discriminate against qualified people with handicaps. It also requires that reasonable accommodations be made by educational institutions.
Note that Section 504 covers "qualified" people with handicaps
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