You and Your Retarded Child

Kirk, Samuel A.; Karnes, Merle B.; Kirk, Winifred D.; Johnson, G. Orville

doi:10.1177/001440295602200810

Cited by 7 publications

(3 citation statements)

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“…They benefit from both simulated experiences and broader literature including lived experiences about disability and shared decision making [11][12][13][14][15][16][17]. Too often, health professionals fail to acknowledge that much past information about intellectual disability left families stigmatized and isolated, and often blamed parents for not accepting outdated information [21,22]. In this context, health professionals were unaware of discriminatory practices in health, education, and rehabilitation that were too often self-fulfilling prophecies and too often did not provide the emotional and physical presence of caring over time.…”

Section: Beginnings: Partnering With Familiesmentioning

confidence: 99%

Family Reflections on a Lifecourse Journey after Neonatal Intensive Care: Neurodiversity, Enablement and Hope

Msall

2024

Children

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In 1969, my sister Christianne was born late preterm with a genetic disorder and given a very pessimistic prognosis. I will describe, from a family perspective, some lifecourse lessons about neurodiversity using the World Health Organization International Classification Model of Functioning (WHO-ICF). This model emphasizes that, in communicating about the complexity of outcomes of disability, attention must be paid to facilitators and barriers for optimizing health, functioning in daily life, and participation in the community. I will describe several developmental lifecourse lessons learned in negotiating fragmented systems of health, education, and community care. I will suggest ways to improve physician–parent communication, focusing on enablement to decrease a family’s sense of isolation and despair. I have benefitted from my parents’ archives, discussions with all my seven sisters (including Christianne), and discussions with my brother and sister-in law. They all have provided invaluable feedback from a family perspective during Christianne’s lived lifecourse journey with neurodiversity.

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Section: Beginnings: Partnering With Familiesmentioning

confidence: 99%

Family Reflections on a Lifecourse Journey after Neonatal Intensive Care: Neurodiversity, Enablement and Hope

Msall

2024

Children

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“…For example, Wolfensberger (1967) has labeled the crisis of learning one's child is mentally retarded as the "novelty shock crisis," which he depicts as being precipitated by a significant jolt in parental expectancies. Common parental responses during this crisis include shock, disbelief (Kirk, Karnes, & Kirk, 1955), and grief (Solnit & Stark, 1961). Parents may simultaneously or subsequently experience a crisis of personal values "due to culturally mediated attitudes toward defect or deviance" (Menolascino, 1977, p. 251).…”

Section: Concerns Regarding the Ability Of Parents To Cope With Their...mentioning

confidence: 99%

“…Parents may simultaneously or subsequently experience a crisis of personal values "due to culturally mediated attitudes toward defect or deviance" (Menolascino, 1977, p. 251). Research has revealed that parents typically experience a broad range of feelings in response to this crisis including disbelief, fear and frustration (Kirk, Karnes, & Kirk, 1955), guilt (Zuk, 1962), denial (Malvia, 1973), and rejection (Menolascino, 1977).…”

Section: Concerns Regarding the Ability Of Parents To Cope With Their...mentioning

confidence: 99%

Parental opposition to deinstitutionalization: A challenge in need of attention and resolution.

Frohboese¹,

Sales²

1980

Law and Human Behavior

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Parental opposition to the deinstitutionalization of mentally retarded persons is a growing, organized phenomenon which has recently emerged as a nationwide challenge to the deinstitutionalization movement. It is a challenge, however, which has been virtually ignored by key actors in the movement, including planners and implementers of deinstitutionalization schemes, systemic and individual advocates, and researchers. In order to begin to address and appropriately resolve the challenges posed by this phenomenon, an examination of it was undertaken in Nebraska using a tripartite conceptual framework which (i) historically described the national and state social-legal context within which parental opposition has emerged; (2) identified the bases of the opposition; and (3) recommended how these concerns could be addressed and appropriately resolved by offering directions for future research and policy analysis based upon applicable psychological theories and studies, and legal decisions and principles.

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Special Education for the Mentally Retarded

Johnson

1968

Pediatric Clinics of North America

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You and Your Retarded Child

Cited by 7 publications

References 0 publications

Family Reflections on a Lifecourse Journey after Neonatal Intensive Care: Neurodiversity, Enablement and Hope

Family Reflections on a Lifecourse Journey after Neonatal Intensive Care: Neurodiversity, Enablement and Hope

Parental opposition to deinstitutionalization: A challenge in need of attention and resolution.

Special Education for the Mentally Retarded

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