Parenting Special Needs Children (page 3)
Our society has only recently begun to understand and recognize that some children, often because of circumstances beyond their control, have unique needs. These needs relate to a group of disabilities that involve problems in seeing, hearing, walking, talking, climbing, or lifting or in providing self-care tasks known as activities of daily living (ADLs) (Hildebrand et al., 2000). These needs create unusual demands on family systems and parents. In some situations, children have unique developmental difficulties and problems that label them as exceptional. In this regard, the term refers to individuals who are different in some manner from the large majority of others their age. Other children have special needs because of chronic, life-threatening illnesses, such as AIDS, diabetes, or cancer.
In the past, little support was available in most communities for assisting these individuals and their families in meeting their special needs. For some children, negative community attitudes and labels served as forms of discrimination that prevented access to the life experiences and community services available to those with normal developmental abilities. In many respects, early efforts to provide services for individuals and families with special needs could be called segregated services, since these were provided under separate support when children were isolated from others (Hildebrand et al., 2000). Negative social stigma is still evident in many cases, particularly for those individuals with chronic illnesses, such as AIDS.
Community-based programs for assisting these individuals and their families have been developed only recently. Generally, the field of special education, which serves those individuals who need such services in their hometowns, has emerged only within the last 30 years. Certainly, a variety of legislative acts at state and federal levels have assisted in bringing about the widespread availability of such services at the community level.
Characteristics of Children with Special Needs
The definition of exceptional children, or those with special needs, was formerly restricted to those with emotional, developmental, or mental difficulties that placed them at a disadvantage in comparison with others or that incapacitated them in their ability to function within the larger society. More recently, however, the meaning of exceptionality has broadened to include those groups of individuals with learning disabilities and other handicaps, as well as those with chronic and terminal illness (Rigazio-DiGilio & Cramer-Benjamin, 2000). Children with special needs in the student population of the United States are generally about 13 percent. In general, males outnumber females who have special needs. For example, Attention Deficit Hyperactivity Disorder (ADHD), formerly included as a learning disability, stands on its own as a separate and distinct condition requiring special needs attention. The classification scheme is so broad that intellectually gifted children also have been termed exceptional because these individuals and their needs are often misunderstood by others in their community. The process of including a child in any of these categories often involves extensive, comprehensive evaluations by a variety of medical, psychological, and educational professionals.
Unless there has been some indication prior to birth that a child is likely to have a developmental disorder, parents and other family members usually have little preparation for accommodating a child with special needs. Parents experience a limitless variety of reactions to having a child who has special needs. These reactions may vary according to the nature of the exceptionality, the degree of impairment, the socioeconomic status of the family system, the availability of professional assistance, the financial resources available to supply the assistance, and the presence of unimpaired children in the family (Leyden, 2002). Parents can be expected to experience a grief and mourning process in reaction to the confirmation of a child’s disability. The discovery that a child has special needs essentially represents a loss for most parents, in particular the loss of a future of normal developmental progress for the affected child (Osborn, 2004).
In many respects, the news serves as a crisis or as a stressor event for a family system, and additional reactions follow for most families. The family as a system must adjust to this newly recognized status of the affected child and begin to search for the numerous ways and means to meet the child’s particular needs and those of family members. This process can take months, even years, as the family strives to accept and reconcile their unique situation in comparison with other families. Ways must be found to include the child into the family’s routines and patterns. Parents, especially, must learn ways to strengthen their committed relationship and find ways to meet the needs of other children in the family. Those family systems that use the crisis and stresses of this situation to their advantage are likely to become stronger by developing healthy coping strategies that may also be applied in other future family crises. On the other hand, those families that acquire unhealthy coping strategies experience even higher levels of stressfulness and greater levels of family disorganization. Ultimately, some will dissolve as the result of the chronic strains experienced under such circumstances.
Generally, many parents experience a process in adjusting to having a child with special needs by which they attain acceptance of the situation although others may experience ambivalence and even rejection of the child. For many, it is difficult to overcome the tendency to personalize this unfortunate circumstance. In some respects, mothers may react differently from fathers when it becomes known that their child is exceptionally different from others.
Parental attitudes about an exceptional child and the circumstances involved in having this child as a family member influence the nature and quality of caregiving (Ripley, 2003). Mothers tend to become the family member assuming the greatest amount of caretaking and nurturing for a child with special needs. However, because fathers and other male family members are expected to be more actively involved in child care today, it is not unusual to see levels of family stress diminish and come more under control when this occurs.
The siblings of a child with special needs are also affected by the child’s presence (Meyer, 2003). It is possible to observe the interrelatedness concept found in family systems theory. Having a sibling with special needs brings some benefits to other children such as learning empathic skills, gaining in tolerance and compassion for those who are seriously different from others, and developing a greater appreciation of personal health status. On the other hand, siblings often report negative effects such as feelings of jealousy because of lack of parental attention, resenting the affected sibling’s presence in the family, or shamefulness and guilt about the affected sibling. Parents should be mindful of the possibilities of these negative reactions. In addition, girls often complain that brothers aren’t expected to assume surrogate parent or caregiver roles to a similar extent. By equalizing these responsibilities between male and female siblings, the psychological risks—to girls, especially—may be minimized.
Cultural backgrounds of families also influence their reactions to an exceptional child. Cultural beliefs color differences in what it means to have a child with special needs as a family member. For example, in an Anglo-European family, a child’s disabilities are described and understood in medical and scientific terms; in Native American Indian families, the child’s disability is placed on spiritual intrusion or the breaking of cultural taboos. Other cultures may attribute the situation to bad luck, an evil influence on a family, or punishment for ancestral sins (Rigazio-DiGilio & Cramer-Benjamin, 2000).
Chronic stress is one of the most frequently observed family reactions to having a child with special needs (Krauss, 2000). Family members can learn healthy coping strategies such as attending support groups, journaling, participating in individual and family therapy, tapping into spiritual resources, and sharing caretaking responsibilities, for example. Networking with other families experiencing similar circumstances is also a helpful source of coping with stress. Unhealthy coping also may manifest in some families when the child with exceptional needs is scapegoated, abused, and emotionally mistreated.
Supports for Families with Exceptional Children
Families with a child with special needs tend to be smaller than average in size and to have lower incomes than the general population (U. S. Bureau of the Census, 2003). Because of their unique circumstances, these families typically make use of more community services and resources in gaining assistance for their child. Several sources provide infrastructural support for these families.
Federal legislation has helped to address the needs of exceptional children and their families. Public Law 94–142, first enacted in 1975, is based on two assumptions: (1) that all children with special needs have a rightful and appropriate place in the public school system, and (2) that all parents have an important role in the education of their children with special needs. Essentially, the law gives parents the right to monitor and judge the appropriateness of the educational experiences their children with special needs receive. The law provides for appointing a surrogate parent for children who are without parents and for funding for special education programs. The law requires that each child with special needs enrolled in public school systems be provided with an individualized educational program (IEP) developed by an education specialist working in conjunction with the child’s parent(s). An IEP must be written, tailored to meet the child’s specific needs, and signed by the child’s parent(s). It must include a statement of present level of educational performance at the time of initial implementation, a list of goals and objectives, and specific educational services and support to be provided. It must also include plans for the child’s participation in the classroom, length of institutionalization (if applicable), and the way goals and objectives will be evaluated at the completion of the plan. Although IEPs are controversial, their value may be shown by the attention now given to meeting the needs of children and their parents along with the more intense involvement of parents in children’s educational experiences.
Public Law 99–457, enacted in 1986, has also influenced the assistance provided to families with exceptional children. It requires states to establish comprehensive multidisciplinary approaches to provide early intervention to infants and toddlers with special needs. It extends the ages of children being served from birth through age 25, emphasizing a focus for services during the prekindergarten years. This law requires that individualized family service plans (IFSP) be provided to children with special needs. An IFSP is written for each child between birth and age 3 by a multidisciplinary group of professionals and the parents. It includes the following: (1) an assessment of the child’s present level of functioning and developmental status; (2) a statement of the family’s strengths and needs in facilitating the child’s developmental progress; (3) a list of goals and objectives for the child’s progress; (4) the means by which the child is expected to achieve these goals and objectives or the experiences that will promote their accomplishment; (5) the means by which the child will be transitioned from early intervention experiences into a preschool program; (6) the time frame during which these will be provided; and (7) the name of the child’s case manager.
In 1991, another federal law, Public Law 102–52, provided states with an additional 2 years to develop systems to serve eligible children with special needs. Public Law 102–119, also enacted in 1991, reaffirmed the early intervention approach to the 1975 Education of the Handicapped Act and strengthened the involvement of families in the educational process of children with special needs.
Taken together, all of these laws comprise the Individuals with Disabilities Education Act (IDEA) (Turnbull & Cilley, 1999). In complying with this legislation, states have established an Interagency Coordinating Council that oversees the delivery of early intervention services to families and children with special needs. Families are protected from having to advocate individually for their children with special needs, as each state is required to provide a state education representative. This person has sufficient authority to actively provide policy planning and implementation for children with special needs and their families.
The IDEA has not sailed through Congress without hitches. There have been disagreements about providing for the costs of these services to individuals and families and resistance to policies relating to disciplining children with special needs at school. President Clinton was finally able to sign the legislation authorizing the IDEA in 1997. In its finalized form, this legislation: (1) reduces incentives to segregate students with special needs, (2) increases federal funding for services, (3) increases the involvement of teachers and parents in developing IEPs for children, (4) generally increases the flexibility of states to provide services, (5) affirms the importance of classroom discipline for all students, and (6) enhances the provision of services to infants and toddlers.
The Elementary and Secondary Education Act of 2001 (also known as the No Child Left Behind law) contains provisions that address the needs of exceptional children in supplementing other legislation. This legislation, considered controversial by some observers (see http://www.nea.org/esea/), allows school districts to provide programming that may increase parental involvement, reallocate financial resources to provide research-based curricula, and heighten accountability of instruction. This law also permits children with disabilities to become classified as having cognitive disabilities, which qualifies special education classrooms and programs for financial assistance.
The kinds of services needed to assist exceptional children and their families often depend on the age and specific problems of the child. Some problems become evident long before a child enters the public school system. In some instances, these problems are noticed at birth or when expected developmental progress fails to occur within the months or years after birth. It is also not unusual for problems to be discovered through special screening activities that regularly occur in many communities. When infants and young children are seen on a regular basis by a physician or health care professional, the doctor or nurse may discover and evaluate the child’s current or future developmental problems. Early detection is crucial because treatment and therapy can often alleviate many potential difficulties if begun soon in a child’s development. Available community services for parents of infants and young children with special needs include day-care centers, hospital programs, public school programs, Head Start programs, and programs offered through colleges and universities.
Respite care is a community service for families and disabled individuals. This service provides temporary relief for developmentally disabled individuals who live at home and also acts as an important element in preventing their institutionalization. This supervisory service assists families in coping with emergency situations that require the absence of primary caregivers and also provides relief from the daily stresses involved in caring for a disabled family member.
School-age exceptional children are included to the maximum extent possible in existing public school programs, a practice known as mainstreaming, or more recently inclusion (Leyden, 2002). These programs are supplemented by special education classes. Because all children do not profit from this educational arrangement, some may be placed exclusively in special education classes. School districts offer a variety of programs and services for exceptional children, which often change as the needs of the children change (Ripley, 2003). These services may include the following:
- Regular classroom experiences, in which the child receives special attention and an individualized program
- Resource room experiences, in which the child is enrolled in a regular classroom but goes to a specially equipped room to receive part of the daily instruction
- Consulting teacher experiences, in which the child’s instruction by a regular teacher is supplemented by a special education teacher
- Day school, in which special educational programs are conducted in a separate room or building (for cases in which the child’s needs cannot be met by including him or her in a regular classroom program)
- Residential schools, which provide education and other treatment experiences that cannot be provided through any other means (usually reserved for those children who are visually or hearing impaired, severely mentally retarded, emotionally disturbed, or severely physically handicapped)
- Hospital or home-bound programs, which serve the needs of a child who must be confined to bed or experience a lengthy convalescent period as the result of some type of disability.
Parents and family systems are especially concerned that children with special needs be provided with appropriate environments (Rigazio-DiGilio & Cramer- Benjamin, 2000). However, they typically experience mixed feelings about this issue. For example, children with special needs are protected and supported when they are placed in special education environments but miss out on important stimulation and interaction experiences because they are segregated from other students. When inclusion all but eliminates the unique attention these children require, they tend to suffer from not receiving such specialized services. The decisions about where and how to provide services for children involve complex issues. Complicating these decisions is the lack of training and experience that creates antipathy among mainstreaming teachers toward students with special needs (Ripley, 2003).
In addition to involving parents in the educational experiences of exceptional children, some kinds of support help the adults and other children in the family system. These families often need professional counseling, and several helpful strategies have been developed for these family members. Three methods are usually applied in these situations (Rigazio-DiGilio & Cramer-Benjamin, 2000):
- Informational counseling occurs when children are first diagnosed and parents are informed of test results, prognosis, and treatment approaches.
- Psychotherapeutic methods, most prominently behavior modification and reflective counseling, are taught to parents and siblings who use the methods in working with the exceptional child or sibling. Pediatric psychotherapy is offered to the affected child in dealing with emotional and behavioral problems.
- Group therapy approaches place a number of parents or siblings into a support network in which individuals share feelings, reactions, and experiences to help each other cope with the stresses in their family systems.
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