TPC-Journal-V5-Issue2

310 and support groups, community activities, neighbors, playmates, extended family, and other groups of people who make up the ever-evolving gears of an interacting environment that contains the child and his or her nuclear family subsystem. Miller (1995) affirmed that a well-functioning psychosocial environment is vital to the child’s healthy maturation, and counselors can work with children and their families to reduce feelings of being overwhelmed. Disabilities are not as inherently stressful as what parents go through while trying to help their child with optimal growth and development. Acquiring adaptive equipment, services, educational accommodations and community participation can be tedious and frustrating. Parents often are required to contact busy physicians, educators, automated insurance provider telephone messages and agency coordinators to get documentation for equipment that they need in order to accomplish simple tasks that the dominant culture takes for granted. Normal activities like comfortable body positioning, eating, toileting, ambulating and being integrated into school classrooms can be prolonged, inordinately exhausting, emotionally draining and time consuming. Once services and equipment are acquired, the family unit may become part of a large, complex, constantly evolving system including, depending on the particular disability, educators, adapted physical educators, therapists (e.g., physical, occupational, speech, respiratory), tutors, dieticians and medical specialists (e.g., pediatricians, gastroenterologists, orthopedic surgeons, cardiologists, urologists, audiologists). Many disabilities require adaptive equipment that is initially unfamiliar to the family. Medical professionals tell parents and their children about assistive health devices that others with similar disabilities have found helpful. The family may need time to adjust to the reality that their child has to use the device, to examine the risks and benefits of equipment and treatments for the disability, and to find someone who provides the service locally. Health devices are often expensive and must be paid for through insurance, government programs or private payments. Obtaining the equipment may be a lengthy, convoluted process that involves repeated negotiation with insurance providers and resubmitting payment requests or searching out alternative funding sources if insurance payment is denied. Once the adaptive equipment arrives, there are often therapy appointments to individualize the fit of the equipment to the child, teach the parents and child how to use the product, coax the child to use the aids, and check to see that the product is doing no harm to the child. It can take weeks of trial and error to modify equipment that is problematic. This process may repeat often as the child grows older.    Children may want to participate in activities that are outside the realm of the Americans with Disabilities Act. Parents may find themselves having to reassure and encourage the people who run these programs to include their child. This process may involve educating Scout leaders, religion teachers, preschool staff, parents of the child’s classmates, camp staff and others about the disability and how to make modifications to include the child, and also may involve calming fears that it will be too difficult for the staff or the child to manage or too dangerous for the child to participate. Most children with limitations want the same independent adventure opportunities as other children; to try new experiences; risk, fail, try again and succeed; and sometimes surpass others’ expectations for them. It is important to help families see that their child needs to be surrounded by a support system that has challenged negative assumptions about people with disabilities. Children with an observable disability do not have the gift of anonymity that most people take for granted. They need comfortable places to just be themselves, recharge emotionally and exist as a member of the group. They need the enduring support and friendship from others who are easy, normal and natural in their interactions with the children, to inoculate them against assaults to their worth that they can encounter in the larger society. On some level, children may think that their parents are giving them affirmation because of their roles as parents. Children need to know that people other than their parents also acknowledge their skills, temperament, accomplishments and personhood.