A Longitudinal Study of Parental Stress and Support: From Diagnosis of Disability to Leaving School

Parental stress attributed to both a child with an intellectual disability and their youngest child without a disability was examined over a seven year period. Stress and support were also examined in relation to the life stages of disability diagnosis, starting school and completing school. Stress attributed to the child with a disability was greater than stress attributed to the youngest child without a disability and remained high over the seven year period, however, an increased level of stress was attributed to the child without a disability. In terms of life stages, diagnosis of intellectual disability in a child remained as the most stress‐inducing of the life events included in the study, however, most parents had also experienced heightened stress at the time their child started school, and also during the transition from school to work. The support parents found most helpful reflected their changing focus of worry over time. The implications and limitations of this study arc discussed.     

从国外特教对象的演变看我国特殊教育的改革

近代世界特殊教育经历了从思想到实践的过程;中国特殊教育经历了从照搬到创新的过程.特殊教育对象也在不断分化,最终形成了特殊需要儿童的概念,这就要求实施全纳教育,满足所有儿童的教育需要.当代特殊教育对象演变趋势表现为以学习障碍儿童教育为重点;重视超常儿童教育;加强生计教育;促进终身教育体系的完善;开展全方位的一体化教育服务.通过对特殊教育对象演变的分析,对中国特殊教育改革的启示为努力扩大特殊教育对象;贯彻因材施教原则;提供生计教育;进一步发展超常儿童教育;正确认识一体化项目中的特殊儿童;改革师资培训制度;做好特殊儿童家长工作.     

Mothering in Families With and Without a Child with Disability

This paper describes some features of a study which compares and contrasts mothers’ perceptions of their family life in three different family environments, those without a child with disability and those families who live with a child with an intellectual or physical disability. All families have children in the middle childhood period allowing the mothers to reflect on earlier experiences and changes in their family life. Mothers’ psychological characteristics are explored in terms of the coping resources they utilise when meeting stressful life situations in their family and how their personal resilience and vulnerability is related to these individual coping resources.     

Seeking inclusive education: disrupting boundaries of ‘special’ and ‘regular’ education

The present paper is part of a larger study carried out in North Queensland, Australia, between 1999 and 2001. The original study focused on the perceptions of 15 women who each have (or had) a child who was medically, educationally and socio‐culturally constituted as having a disability. Qualitative methods were used for research design and to gather data. Poststructural and feminist perspectives were added to provide additional methods of data analysis. The primary focus in this paper is the spatiality of inclusive education with/in the discursive site of (special) education. It also considers the binary of regular/special education in relation to the spaces of educational discourse through the perspectives of the mothers, covering a temporal frame of 40 years. The mothers’ perceptions provide a historical lens on the changes that occurred in special education in North Queensland over this time, while at the same time offer an insight into the spaces disability occupies in education discourse.     

Special Education as Neoliberal Property: The Racecraft,Biopolitics, and Immunization of Disability

Through the juxtaposition of 2 recent Supreme Court actions—Allston v. Lower Merion County School District (2015) and Endrew F. v. Douglas County School District (2017)—this article argues that special education is a neoliberal property that works to recruit disability through scientific-juridical qualifications of educational life that are more likely to be available for White students who have essentialized disabilities than students of color who are ascribed disability labels. This thesis draws from a variety of theoretical perspectives—including, racecraft, biopolitics, and immunization—to formulate a crip reading of present special education policy. Although critiquing overrepresentation and disproportionality, this article also suggests a way of dialectically attenting to the uses of disability labeling toward the reciprocal production of pathological ableism and biopolitical racism. Moving from a racecraft of disability labeling to a biopolitics of special education, this article concludes by arguing that Whiteness recruits disability into its self-enclosed and propertied boundaries with the effect that educational life is contractually immunized against communal obligations to human difference. James Baldwin’s (1963/1998), “A Talk to Teachers,” critically inflects this conclusion and also motivates the article’s analytical excursion into the troubling nexus of special education policy, neoliberalism, and Whiteness.     

Living with Children with an Intellectual Disability: Parents Construct their Reality

This paper reports a study that adopted an interpretivist paradigm as a basis for parents and researchers to co‐create a discourse that outlines life experiences as they relate to parenting a child with an intellectual disability. Repertory grid methodology was employed to inform the process of discourse development. A model of the five interrelated systems of events or issues that impinge upon the perceptions of parents of children with an intellectual disability is proposed. In addition, details about the group's perceptions of those environmental events or issues that are pertinent to living with and caring for a child with an intellectual disability are reported.     

A Question of Universality: Inclusive Education and the Principle of Respect

The universalist argument that all children should be educated in inclusive mainstream schools, irrespective of their difficulties or disabilities, is traced to the claims (a) that special schools and disability 'labels' are inherently humiliating, and (b) that no decent society tolerates inherently humiliating institutions. I ask (following Avishai Margalit) whether there is a sound reason for a child to feel humiliated by special schools/disability 'labels' as such, and find none. Empirically, some do and some do not find these humiliating, and it is argued that the failure to address the multiple 'realities' of disability and learning difficulty is responsible for the policy impasse in this area.     

Helping Military Families Who Have a Child with a Disability Cope with Stress

This exploratory study investigates perceived levels of family stress for military families who have a young child with a disability. Two primary areas of study were the sources and levels of stress, and the benefits of resources designed to help families cope. Results of the study indicate an increased level of stress for families when the demands of military life were coupled with the demands of caring for a young child with a disability. Events such as separation from family members, relocation, deployment, and personal safety and health issues emerged as concerns of the military personnel. The importance of coordinating services for these families is discussed.     

Until somebody hears me: parent voice and advocacy in special educational decision making

When a family finds out their child has a disability, they enter the world of special education which has its own terminology, rules, settings and personnel. In addition to grappling with the meaning of their child's special needs, families are also thrown into the role of principle advocate for their child. The research study reported here presents the findings from focus groups conducted in the United States of America with 27 diverse families on their efforts to obtain the best educational outcomes for their children. In this article, Robyn Hess, Amy Molina and Elizabeth Kozleski bring their collective past experiences, as a school psychologist, bilingual counsellor and special education teacher respectively, to bear on this topic and frame the issue from a systemic perspective. They argue that engaging in conversation with families around their needs, as well as assisting them in their efforts to advocate for their child, is the first step in creating more equal partnerships between parents of children with special needs and educational professionals.     

Parents' attitudes to inclusion of their children with special needs

This study investigated the attitudes of 354 Australian parents who have a child with a disability and who attends a state school in Queensland. The types of disability of the children were broadly in accordance with accepted prevalence figures, except for a greater number reported as having autistic spectrum disorder and fewer students with a learning difficulty/attention deficit hyperactivity disorder. The children were in a range of classes, from special schools to schools where there was in-class help from a special teacher or teacher aide. Many of the parents favoured inclusion, some would if additional resources were provided, and a small group of parents favoured special placement. There were a limited number of negative attitudes to inclusion reported by the parents, and though some parents thought that some need existed for in-service education about inclusion, this was not a widespread view.     

Parents’ views of an optimal school life: using Social Role Valorization to explore differences in parental perspectives when children have intellectual disability

Children with disability continue to experience disadvantage in their school lives; thus, the question of what makes up an optimal school life, and whether this is different for children with disability, becomes critical. This paper reports on research into parental views about an optimal school life and the usefulness of Social Role Valorization theory as a framework for exploring this issue. Six focus group interviews were used to collect data from 30 parents. Children of a variety of ages, with and without disability, were represented. All groups were similar in the aspects they regarded as optimal in a child’s school life. These fell into five categories: being connected, growth, personhood, basic needs, and happiness. Despite this similarity across groups, there were some notable differences in the detail; for example, parents of children with disability had a stronger focus on children being wanted, high expectations, and being seen as an individual.     

Mothers’ Experiences of Children in the Autistic Spectrum in Greece: Narratives of Development,Education and Disability Across their Blogs

Autism occupies a prominent place in scientific research both as a medical and as a socio-cultural phenomenon. Autism is studied as a disorder and a diagnostic label, as an experience of people with autism, their parents and their supporters, and finally as a disability related to stigma and rejection. The purpose of this article is to describe the posted experiences on personal blogs of five mothers who have school-aged children in the autistic spectrum in Greece. The qualitative method of content analysis is used for analysing the personal narratives across their blogs because this method focuses on describing and understanding the presented experiences and acknowledges the central role of the researcher in describing and signifying the issues discussed. The results of the content analysis show that the mothers seem to view autism through a developmental perspective and as they lead efforts for their child’s developmental timeline they are worried about their child’s developmental course and tend to experience high levels of anxiety, depression and burnout. The mothers act as practical scientists and co-therapists, taking an active role in educating and raising their children, finding a school and selecting appropriate interventions. The mothers struggle to obtain quality in education and services, while faced with the absence of technical infrastructure and understaffing in schools, lack of funding, covert or overt practices of acceptance and rejection of people with disabilities in the educational system, the attitudes and ignorance of some educators, and the high cost of private services. These mothers, at first, view autism as a tragedy and within their social environment they face covert or overt rejection since their children are stigmatised as “abnormal”. Later on, the mothers accept their child’s disability as a prerequisite for gaining a new life experience. It seems that the mothers have a mixed perception of disability, which sometimes tends to be closer to the medical model, sometimes to the hybrid model, while other times to the social model of disability.     

In Transition: Experiences of Parents of Children with Special Needs at School Entry

Pre-school children with special needs face a complex transition to school, requiring additional administrative, social and educational support. In this study, parents of 40 children with special needs reported on the transition to school experience of their 4–6-year-old child. They completed a measure of impact of the child’s disability on their family and an assessment of the quality of services experienced. Individual, semi-structured interviews contextualized these evaluations. Twenty children (pre-transition) were in preschool; 20 had already started school (post). Post-transition parents reported less average disability impact on family, generally lower perception of quality of care than pre-transition ones, and long waiting periods for school-based support. Most parents, however, reported satisfactory linkages between prior-to-school services and school. In conclusion, this study demonstrates that, despite the current climate of support for early child development, barriers for satisfactory transition to school still exist, and are largely due to low effectiveness of existing policies.     

Problem‐Solving Model for Decision Making with High‐Incidence Disabilities: The Minneapolis Experience

The problem‐solving model (PSM) is used in the Minneapolis Public Schools to guide decisions regarding: (1) interventions in general education, (2) referral to special education, and (3) evaluation for special education eligibility for high‐incidence disability areas. District implementation was driven by four themes: the appropriateness of intelligence tests and the IQ‐achievement discrepancy for determination of eligibility, bias in assessment, allocation of school psychologist time, and linking assessment to instruction through curriculum‐based measurement. This article describes how the PSM was designed as a three‐stage process to measure response to intervention and used in the special education eligibility process. Program evaluation data collected since initial implementation in 1994 is reported in the areas of child count, achievement, referral, eligibility, and disproportion. The authors discuss the limitations of conducting PSM research in school settings, barriers to implementation of PSM, and make suggestions for enhancing treatment integrity.     

Transitions and critical events in the family life cycle: Implications for providing support to families of children with disabilities

Recognizing that parental adaptation to having a child with a disability is a life-long process that occurs within the context of the family's developmental life cycle, psychologists are becoming increasingly interested in life-cycle transitions and critical events of families with a child who is disabled. Professionals are just now beginning to examine systematically the potential for periodic changes in adaptation throughout a family's life cycle and ways in which professionals can support family members. This article reviews the literature regarding transitions and critical events that present challenges to families and the sources of support that families use during such times. Implications for providing support to families are discussed.     

身心障碍者自我决策研究及对当前特殊教育的启示

自我决策被认为是继专业化运动和父母争取权利运动后,促进障碍教育与福利发展的第三波障碍权利运动。它对身心障碍者未来的生活具有相当关键性的影响。文章对自我决策的理论内涵、发展、法律法规、研究成果和未来研究趋势做了综述,分析了自我决策对特殊教育和身心障碍学生的影响和意义,并针对当前特殊教育的现状提出了切实可行的培养办法。对于发展身心障碍学生的自我决策能力、增进积极的转衔成果、提高生活质量有一定的现实意义。     

The use of Social Story DVDs to reduce anxiety levels: a case study of a child with autism and learning disabilities

The study outlined here was an attempt to examine the use of Social Story DVDs as a single‐intervention approach in addressing the issue of anxiety around turn taking in a child with dual diagnosis of autism and learning disability. The child selected was in a school for children with additional needs. The child was taught in a daily session focusing on the Social Story DVD materials around ‘turn taking’ and accompanying ‘turn‐taking’ activities. Immediate peers were also included in the ‘turn‐taking’ sessions and the child would incorporate these skills with his peers in the classroom setting. The results showed that only through combining strategies and combining interventions can the diverse range of individual needs of those with autism spectrum disorder (ASD) and learning disability be met. Using a sole intervention to address specific social deficits misses the complexity of ASD and each individual's uniqueness.     

An interview study of why parents conduct intensive ABA home training for their child with autism spectrum disorder. An analysis from the lens of the dialectical disability model

The number of parents undertaking an intensive home training programme of children with disabilities (e.g. Applied Behavioural Analysis) has increased. It reveals a paradox in current disability research and policies. On the one hand, policies in general are aimed at inclusion through movement of social barriers for participation, grounded in the social model of disability. On the other hand, intensive home training is based on the aim of rehabilitation through intensive training of individual cognitive and social skills, an approach grounded in a bio-medical model. Intensive home training programmes are supported by political legislation that enables parents to partake the training and hire the necessary helpers. How is this paradox viewed from the perspective of the parents? From the departure of the dialectical model of disability – and its central concepts of developmental incongruence, developmental time and social agency – two mothers practising home training with their children with autism disorder were interviewed about their motives for home training and subsequent experience with their child. Results showed that the motive to home training was to create a local congruence that allowed the child to thrive. Intensive home training also restored the mothers’ sense of agency vis-à-vis their child’s development. However, home training might not abolish the need for adaptations of the child’s social practices outside the family. It is discussed how societal support to home training risks to hinder higher order reorganisation of developmental opportunities that are necessary to actualise policy statements of inclusion.     

失独家庭精神关爱问题研究

失独家庭,指的是独生子女发生意外伤残、死亡,其父母不再生育和收养子女的家庭。近年来,失独问题逐渐成为社会关注的一个焦点。失独群体除了要承受丧失儿女的孤苦,更要担心疾病和养老困难等一系列现实难题。通过以往的研究了解到,失独家庭的困难简单地从物质层面帮助是远远不够的。失独家庭对精神关怀、精神关爱的需求表现更为强烈。因此说,做好失独家庭的精神关爱工作和提高失独老人精神文化生活质量,是目前做好失独家庭帮扶工作的重点。基于此,选择失独家庭的精神关爱作为研究对象,并在认真了解失独家庭面临的困难现状后,分析和探究给予失独家庭精神关爱的方法和途径。     

Physical Disability on Children's Television Programming: A Content Analysis

Research Findings: Media representations of physical disability can influence the attitudes of child audiences. In the current study, the depiction of physical disability was analyzed in more than 400 episodes of children's television programming to better understand how media depict physical disability to children and, in turn, how exposure may influence children's attitudes toward this social minority. Characters with a physical disability were rare. When present, characters with a physical disability tended to be older White males. The disabilities were not central to the characters' importance, but the characters themselves were not central to the plot. A majority of characters with a physical disability were depicted as morally good, attractive, and satisfied with life. Able-bodied characters were shown as treating characters with a physical disability the same way they treated other able-bodied characters. Practice or Policy: The results of the current study could be utilized by policymakers, media professionals, and educators in an effort to increase depictions of physical disability in children's programming as a method of integrating individuals with physical disabilities into a predominantly able-bodied society.