Со времени первого издания этой книги в 1989 году во многих профессиональных дисциплинах произошел сдвиг в сторону системной модели. В сферах образования, социальной работы, медицины и развития ребенка можно найти множество примеров подходов, в которых принимается во внимание вся семья. Растущий интерес к культурным различиям также повышает внимание к расположению семьи на карте социального мира. Мы постарались зафиксировать некоторые из этих изменений в своей книге. Надеемся, что наше издание станет не только отражением перемен, но и их дальнейшим катализатором.
Семья – наш важнейший ресурс. Именно в семье индивид получает первые знания, навыки и переживания. У ребенка из сильной семьи есть возможность вырасти сильным человеком. Невозможно помочь ребенку, не помогая его семье. Только при сотрудничестве специалиста и семьи возможно эффективное вмешательство. Следовательно, специалист должен понимать мир, в котором живет ребенок, – мир семьи.
Семья, в свою очередь, встроена в более крупные социальные структуры. Она – часть системы убеждений, ценностей и типов поведения, формирующих ее мышление и ее действия. Реакции на нарушения у детей – продукты социума, формирующиеся на протяжении всей жизни. Если мы действительно хотим помочь семье – мы должны делать это на ее условиях, в контексте ее системы понятий. Только с помощью такого системного подхода можем мы надеяться улучшить качество жизни обычных семей, в которых рождаются дети с необычными потребностями.
Ablon, J. (1982). The parents' auxiliary of Little People of America: A self-help model for social support for families of short-statured children. In L. D. Borman (Ed.), Helping people to help themselves (pp. 31-46). New York: Haworth.
Abraham, W. (1958). Barbara: A prologue. New York: Rinehart.
Adams, M. (1973). Science, technology, and some dilemmas of advocacy. Science, 180, 840-842.
Adams, P., & Nelson, K. (Eds.). (1995). Reinventing human services: Community and family-centered practice. New York: Aldine deGruyter.
Agee, L. C, Innocenti, M., & Boyce, G. G. (1995). I'm all stressed out: The impact of parenting stress on the effectiveness of a parent involvement program. Center for Persons with Disabilities News, 8, 4-7.
Alper, S. K., Schloss, P. J., & Schloss, G. N. (1994). Families of students with disabilities: Consultation and advising. Boston: Allyn & Bacon.
Alvirez, D., & Bean, E D. (1976). The Mexican-American family. In G. H. Mindel & R. W. Habenstein (Eds.), Ethnic families in America: Patterns and variations (pp. 271-292). New York: Elsevier.
Anderson, P. (1988, June). Serving culturally diverse populations of infants and toddlers with disabilities. Paper presented at the meeting of the Society for Disability Studies, Washington, DC.
Anderton, J. M., Elfert, H., & Lai, M. (1989). Ideology in the clinical context: Chronic illness, ethnicity and the discourse of normalisation. Sociology of Health and Illness, 11, 253-258.
Andrew, G. (1968). Determinants of Negro family decisions in management of retardation. Journal of Marriage and the Family, 30, 612-617.
Appoloni, T (1987, November/December). Guardianship: New options for parents. Exceptional Parent, pp. 24-28.
Attneave, G (1982). American Indians and Alaska native families: Emigrants in their own homeland. In M. McGoldrick, J. K. Pearce, & J. Giordano (Eds.), Ethnicity and family therapy (pp. 55-83). New York: Guilford Press.
Ayer, S. (1984). Community care: The failure of professionals to meet family needs. Child: Health and Development, 10, 127-140.
Azar, B. (1994). Research plumbs why the «talking cure» works. АРА Monitor, 25, 24.
Azziz, R. (1981, July). The Hispanic parent. Pennsylvania Medicine, pp. 22-25.
Bailey, D. В., & Wolery, M. R. (1984). Teaching infants and preschoolers with handicaps. Columbus, OH: Merrill.
Bailey, D. В., Jr., & Simeonsson, R. J. (1984). Critical issues underlying research and intervention with families of young handicapped children. Journal of the Division for Early Childhood, 9, 38-48.
Bailey, D. В., Jr., Simeonsson, R. J., Winton, P. J., Huntington, G. S., Comfort, M., Isbell, R, O'Donnell, K. J., & Helm, J. M. (1986). Family-focused intervention: A functional model for planning, implementing, and evaluating individual family services in early intervention. Journal of the Division for Early Childhood, 10, 156-171.
Baker, B. L. (1989). Parent training and developmental disabilities. Washington, DC: American Association on Mental Retardation.
Baker, B. L., & Brightman, A. J. (1989). Steps to independence. Baltimore: Brookes.
Bank, S. R, & Kahn, M. D. (1982). The sibling bond. New York: Basic Books.
Baranowski, M. D. (1982). Grandparent-adolescent relations: Beyond the nuclear family. Adolescence, 17, 575-584.
Barnett, W. D. (1995). Effects of children with Down syndrome on parents' activities. American Journal on Mental Retardation, 100, 115-127.
Bartz, K. W., & Levine, E. S. (1978). Childbearing by black parents: A description and comparison to Anglo and Chicano parents. Journal of Marriage and the Family, 40, 709-719.
Baus, G. J., Letson, L., & Russell, E. (1958). Group sessions for parents of children with epilepsy. Journal of Pediatrics, 52, 270-273.
Baxter, C. (1986). Intellectual disability: Parental perceptions and stigma as stress. Unpublished doctoral dissertation, Monash University, Victoria Australia.
Beckman, P. J. (1983). Influence of selected child characteristics on stress in families of handicapped infants. American Journal of Mental Deficiency, 88, 150-156.
Beckman, P. J., & Pokorni, J. L. (1988). A longitudinal study of families of preterm infants: Change in stress and support over the first two years. The Journal of Special Education, 22, 66-65.
Beit-Jones, M. S., & Kapust, L. R. (1986). Temporal lobe epilepsy: Social and psychological considerations. Social Work in Health Care, 11, 17-33.
Bell, R. R. (1965). Lower class Negro mothers' aspirations for their children. Social Forces, 43, 493-500.
Berg, J. M., Gilderdale, S., & Way, J. (1969). On telling parents of the diagnosis of Mongolism. British Journal of Psychiatry, 115, 1195-1196.
Berger, M., & Foster, M. (1986). Applications of family therapy theory to research and interventions with families with mentally retarded children. In J. J. Gallagher & P. M. Vietze (Eds.), Families of handicapped persons (pp. 251-260). Baltimore: Brookes.
Bernard, A. W. (1974). A comparative study of marital integration and sibling role tension differences between families who have a severely mentally retarded child and families of non-handicapped (Doctoral dissertation, University of Cincinnati). Dissertation Abstracts International, 3SA (5), 2800-2801.
Bernheim, К. E, & Lehman, A. (1985). Working with families of the mentally ill. New York: Norton.
Bernstein, N. R. (1978). Mental retardation. In A. M. Nicholi (Ed.), The Harvard guide to modern psychiatry. Cambridge, MA: Harvard University Press.
Betz, M.,& O'Connell, L. (1983). Changing doctor-patient relationships and the rise in concern for accountability. Social Problems, 31, 84-95.
Beyer, H. A. (1986, December). Estate planning: Providing for your child's future. Exceptional Parent, pp. 12-18.
Biklen, D. (1974). Let our children go: An organizing manual for advocates and parents. Syracuse, NY: Human Policy Press.
Billingsley, A. (1968). Black families in white America. Englewood Cliffs, NJ: Prentice Hall.
Birenbaum, A. (1970). On managing a courtesy stigma. Journal of Health and Social Behavior, 11, 196-206.
Birenbaum, A. (1971). The mentally retarded child in the home and the family cycle. Journal of Health and Social Behavior, 12, 55-65.
Blacher, J. (1984a). Adynamic perspective on the impact of a severely handicapped child on the family. In J. Blacher (Ed.), Severely handicapped young children and their families: Research in review (pp. 3-50). Orlando, FL: Academic Press.
Blacher, J. (1984b). Sequential stages of parental adjustment to the birth of a child with handicaps: Fact or artifact? Mental Retardation, 22, 55-68.
Blacher, J. (Ed.). (1984c). Severely handicapped young children and their families: Research in review. Orlando, FL: Academic Press.
Blacher, J., & Bromley, В. E. (1990). Correlates of out of home placement of handicapped children. Journal of Children in Contemporary Society, 21, 3-40.
Blacher, J., Nihira, K., & Meyers, С. E. (1987). Characteristics of home environments of families with mentally retarded children: Comparison across levels of retardation. American Journal of Mental Deficiency, 91, 313-320.
Blackard, M. К., & Barsch, Е. Т. (1982). Parents' and professionals' perceptions of the handicapped child's impact on the family. TASH Journal, 7, 62-70.
Blum, R. W. (1992). Chronic illness and disability in adolescence. Journal of Adolescent Health, 13, 364-368.
Blumberg, B. D., Lewis, M. J., & Susman, E. J. (1984). Adolescence: A time of transition. In M. G. Eisenberg, L. G. Sutkin, & M. A. Jansen (Eds.), Chronic illness and disability through the life span: Effects on self and family (pp. 133-149). New York: Springer.
Boles, G. (1959). Personality factors in mothers of cerebral palsied children. Genetic Psychology Monographs, 59, 160-218.
Boulton, ML, Tuckett, D., Olson, G, & Williams, A. (1986). Social class and the general practice consultation. Sociology of Health and Illness, 8, 325-350.
Bowen, M. (1978). Family therapy in clinical practice. New York: Jason Aronson.
Bowlby, J. (1951). Maternal care and mental health. Geneva: World Health Organization.
Bowman, В. T. (1992). Who is at risk for what and why? Journal of Early Intervention, 16(2), 101-108.
Boyce, G. G., & Barnett, S. W. (1991). Siblings of persons with mental retardation: A historical perspective and recent findings. Unpublished manuscript, Utah State University.
Boyce, G. G., Behl, D., Mortensen, L., & Akers, J. (1991). Child characteristics, family demographics and family processes: Their effects on the stress experienced by families of children with disabilities. Counselling Psychology Quarterly, 4, 273-288.
Boykin, A. W. (1983). The academic performance of Afro-American children. In J. Spence (Ed.), Achievement and achievement motives. San Francisco: Freeman.
Breslau, N. (1982). Siblings of disabled children. Journal of Abnormal Child Psychology, 10, 85-96.
Breslau, N., Weitzman, M., & Messenger, K. (1981). Psychologic functioning of siblings of disabled children. Pediatrics, 67, 344-353.
Brinthaupt, G. (1991). The family of a child with cystic fibrosis. In M. Seligman (Ed.), The family with a handicapped child (2nd ed., pp. 295-336). Needham Heights, MA: Allyn & Bacon.
Bristol, M. M. (1984). Family resources and successful adaptation to autistic children. In E. Schopler & G. B. Mesibov (Eds.), The effects of autism on the family (pp. 289-310). New York: Plenum.
Bristol, M. M. (1987). Methodological caveats in the assessment of singleparent families of handicapped children. Journal of the Division for Early Childhood, 11, 135-143.
Bristol, M. M., & Schopler, Е. (1984). A developmental perspective on stress and coping in families of autistic children. In J. Blacher (Ed.), Severely handicapped young children and their families: Research in review (pp. 91-141). Orlando, FL: Academic Press.
Bronfenbrenner, U. (1979). The ecology of human development. Cambridge, MA: Harvard University Press.
Brotherson, M. J., Backus, L. H., Summers, J. A., & Turnbull, A. P. (1986). Transition to adulthood. In J.A. Summers (Ed.), The right to grow up: An introduction to adults with developmental disabilities (pp. 17-44). Baltimore: Brookes.
Bubolz, M. M., & Whiren, A. P. (1984). The family of the handicapped. An ecological model for policy and practice. Family Relations, 33, 5-12.
Butler, J. A, Rosenbaum, S.,& Palfrey, J. S. (1987). Ensuring access to health care for children with disabilities. New England Journal of Medicine, 377(3), 162-165.
Caldwell, В., & Guze, S. (1960). A study of the adjustment of parents and siblings of institutionalized and non-institutionalized retarded children. American Journal of Mental Deficiency, 64, 839-844.
Camp cares for handicapped kids. (1986, April 18). Johnstown (PA) Tribune Democrat, p. 5C.
Cantwell, D. P., & Baker, L. (1984). Research concerning families of children with autism. In E. Schopler & G. B. Mesibov (Eds.), The effects of autism on the family (pp. 41-63). New York: Plenum.
Capper, C. (1990). Students with low incidence disabilities in disadvantaged, rural settings. Exceptional Children, 56(4), 338-344.
