fifth of all Americans have some type of disability (United States Census Bureau, 2000).
Alarming? Yes, however, disabilities do not discriminate and people of all ages, race, and socioeconomic backgrounds can be affected or have a family member who has a disability. Disabilities in children may include, but are not limited to Attention Deficit Hyperactivity Disorder, Asperger's Disorder, Autism, Central Auditory Processing Disorder, Dyscalculia, Dyslexia, Dysgraphia, Dysprazia, Learning Disabilities, and Nonverbal Learning Disability. While these are only a few of the ever-growing list of disabilities discovered in children, the list continues to grow as additional research is conducted to identify more disabilities in children. This paper will discuss the issues, concepts, and findings of recent literature on the important issue of children with disabilities. It will also include information on how a disabled child and the parents search for help and resources with an emphasis being on treatment and educational strategies for both the child and parents.
Children with Disabilities
When parents discover that a child has a disability, either learning or physical, is certainly a stressful time for them. Their perfect world is temporality put on hold, and they usually experience fear for their child's growth, education, and future. They are unsure where or who to turn to for help, resources, or additional training. Their search often leads to their doctor of choice, but soon they also turn to various medical or government agencies developed for the protection and best interests of the whole child.
Parents and pediatricians are usually the first to notice delayed progress in infants or toddlers. These delays are valid concerns and the next step is usually developmental screening. The screening provides parents the information they need to pursue further testing and intervention if deemed necessary. The American Academy of Pediatrics (Cantu, 2004) views screening for infants and young children as "a valid and reliable way to assess skills in a variety of domains."
Categories exist in the areas of function and performance and include gross motor skills, fine motor skills, communication, adaptive behavior, cognition and personal and/or social skills. There are two levels of screening that help to identify the child's general health, growth patterns and overall physical and social development. If a child is identified with developmental or functional disabilities, other specialists in the area such as pediatric physical therapist, educators, and speech pathologist are consulted for an individualized health and developmental plan.
The second level of screening consists of more detailed instruments with more time being given to the overall developmental function of the child. Testing occurs under most circumstances in the presence of the child family members and if possible, in an environment that the child is familiar with so that a comfort zone is reached. Information gathered within this environment is beneficial with the prognosis of the child's functional capacities while engaged in typical daily activities. Results are then evaluated with possible suggestions of further testing or provide a basis for establishing a diagnosis and intervention plan (Cantu, 2004).
Heredity and chromosomal disorders also play an important role in the causes of developmental delay and disability (American Dietetic Association, 2004). Developmental disabilities include a wide array of problems. Some are sensory or neuro-motor based, some cognitive, some psycho-social and include Attention Deficit Hyperactivity Disorder, Asperger's Disorder, Autism, Central Auditory Processing Disorder, Dyscalculia, Dyslexia, Dysgraphia, Dysprazia, Learning Disabilities, and Nonverbal Learning Disability with each category containing sub-varieties and various levels of complexity. Children who have been diagnosed with developmental disabilities may also be at nutritional risk. Many times, a child may have two or more diagnosed conditions and require extensive special health care needs. A survey of children from birth to age three years with developmental delays in early intervention programs found 79% to 90% had one or more nutrition risk indicators (Bayerl, Ries, Bettencourt, & Fisher, 1993).
A disability can affect many areas of a child and the family's life, both because of the disability itself and the attitude and barriers toward disabilities that are within society. Children who have disabilities face a variety of challenges within their personal lives. A physical disability makes it difficult to perform daily activities, such as performing personal hygiene routines, eating, and simply dressing themselves. These challenges can be overcome by providing a disabled child with assistive devices, help from others, and handicap accessible buildings along with public transportation. With modifications, most people with disabilities can manage their personal needs.
The parent's and child's family also experience difficulty balancing the desire to protect the child who has a disability. The child's siblings may feel guilty about the disability, but at the same time, they might also be jealous because of the additional attention given to the child with a disability. Many times, the family has financial challenges because of the additional medical bills encountered with a child having a disability. Parents may have to work a second job, thus creating fewer hours at home to help out with the family.
With parents working, appropriate child care becomes an issue. Children with disabilities, like other children, also need a warm, nurturing environment that will provide love, stimulation, friendship and enjoyment in order to flourish. Locating safe and quality child care that provides all of these things is vitally important. The child care center must be able to comply with the American Disabilities Act, while also meeting the special needs of the child. Additional training may be necessary to cope with the medical and emotional needs of the child. Many times, parents postpone careers in order to stay home with the child having disabilities, thus creating a more stressful financial situation than previously experienced. In order to overcome some of the financial burden, government agencies provide resources that aid in the area of medical or educational resources.
Intervention is a key area to helping a child with disabilities. Proper nutrition is one of the most convenient forms of intervention. Early legislation in 1920 addressed the need for expecting mothers to receive adequate nutrition to provide for the birth of a healthy newborn. This passage is known as the Maternity and Infant Act. Next, in 1935, Title V of the Social Security Act was passed providing for three programs, Maternal and Child Health, Crippled Children's Services, and Child Welfare. With the onset of 1950, clinical programs for children with mental retardation emerged and educational workshops on nutrition and mental retardation developed to better train and update the skills and knowledge of nutrition personnel. The 1960's brought about more legislation that included programs designed to prevent mental retardation. This would occur through improved prenatal and newborn well baby care, child medical screenings, and training programs at the university level. The year 1965 saw the beginning of Head Start. The program mandated that 10% of the enrolled population must have disabilities (Head Start Bureau, 1996).
Legislation continued to improve and be implemented during the sixties. The Child Nutrition Act of 1966 and the Special Supplemental Nutrition Program for Women, Infants, and Children, also known as WIC, was implemented in 1972 to provide nutrition assistance to all eligible infants, children, and adolescents, including those with special needs. However, all WIC services are terminated at age five years. Recently, there has been increased emphasis on the importance of ensuring that children with special needs in schools receive substitutions for the regular meal if modifications are required because of their disabilities. This is mandated by the U.S. Department of Agriculture's nondiscrimination regulations as well as the regulations governing the National School Lunch Program and School Breakfast Program. With the passing of these regulations, requirements stated a physician's statement be provided, listing the disability, the reason for meal modification, and the specific substitutions needed.
Parents of disabled children experience a great deal of stress. Research (Lessenberrry & Rehfeldt, 2004) shows that interactions of parents with their special needs child can have a profound impact on the progress that a child makes with their therapeutic or educational progress. Studies were completed to identify the various levels of stress that parents encounter during life events and changes. Various measurement instruments were utilized during the evaluation with a total of 358 parents with an average age of 34.4 years and a mean educational level of 15.5 years. The information collected from the study provides professionals who provide services to children with disabilities and their families the opportunity to access how their work will better serve the needs of the people whom they work with.
The Parenting Stress Index (PSI) instrument was used to identify the impact that the parenting role has on the individual's stress level. Information is collected that addresses three separate sections: child's characteristics, parent's characteristics, and an optional stressful life events scale. Categories tested include various aspects of a person's personality and deal with mood, adaptability, degree of demands, hyperactivity, acceptability of child to the parents, the parent's reinforcement for the child. The PSI is effective to help determine the Parental Stress level and can be attributed to the parenting role…