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Moral laboratories
Moral Laboratoriesis an engaging ethnography and a groundbreaking foray into the anthropology of morality. It takes us on a journey into the lives of African American families caring for children with serious chronic medical conditions, and it foregrounds the uncertainty that affects their struggles for a good life. Challenging depictions of moral transformation as possible only in moments of breakdown or in radical breaches from the ordinary, it offers a compelling portrait of the transformative powers embedded in day-to-day existence. From soccer fields to dinner tables, the everyday emerges as a moral laboratory for reshaping moral life. Cheryl Mattingly offers vivid and heart-wrenching stories to elaborate a first-person ethical framework, forcefully showing the limits of third-person renderings of morality.
eBook
Thriving in the Face of Childhood Adversity
This book explores the life experiences of children who are born with a variety of medical or physical disorders. It provides an integration of scientific and personal perspectives on such conditions. In accounting for both outcomes, it suggests how the social responses of others (family, friends, and professionals) may foster resilience as well as risk. It also describes the results of an intervention that facilitates the more positive experiences of such children early in life.
eBook
HandiLand : the crippest place on Earth
Young people with disabilities live on a spectrum of privilege according to race, class, gender identity, and type of disability. Wheeler invokes the fantasy of HandiLand, an ideal society ready for young people with disabilities before they get there, as a yardstick to measure how far we've come and how far we still need to go toward the goal of total inclusion.
Book
The Efficacy and Impact of a Special Education Legislative Advocacy Program Among Parents of Children with Disabilities
With the looming reauthorization of the Individuals with Disabilities Education Act (IDEA), it is important for parent input to inform legislative changes. Unfortunately, parent input has been limited in past IDEA reauthorizations. Thus, it is critical to develop and test interventions to improve parent legislative advocacy. With 37 parents of children with disabilities, we conducted a randomized controlled trial to determine the efficacy and impact of an advocacy program. Results indicate significant increases in special education knowledge and special education legislative advocacy activities for the intervention (versus waitlist-control) group. However, there were no significant changes in civic engagement. Implications for research and practice are discussed.
Journal Article
Everything no one tells you about parenting a disabled child : your guide to the essential systems, services, and supports
\"The honest, relatable, actionable roadmap to the practicalities of parenting a disabled child, featuring personal stories, expert interviews, and the foundational information parents need to know about topics including diagnosis, school, doctors, insurance, financial planning, disability rights, and what life looks like as a parent caregiver. For parents of disabled children, navigating the systems, services, and supports is a daunting, and often overwhelming, task. No one explains to parents how to figure out the complex medical, educational, and social service systems essential to their child's success. Over and over, parents are being asked to reinvent the exact same wheels. According to the CDC, \"Every 4 1/2 minutes a baby is born with a birth defect in the United States.\" That's 1 in 33. There's no handbook for how to do this. Until now. Presented with empathy and humor, Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports gives parents the tools to conquer the stuff, so that they can spend less time filling out forms, and more time loving their children exactly as they are. With over a decade of experience navigating these systems for her own child, author Kelley Coleman presents key information, templates, and wisdom alongside practical advice from over 40 experts, covering topics such as diagnosis, working with your medical team, insurance, financial planning, disability rights and advocacy, and individualized education plans. Everything No One Tells You About Parenting a Disabled Child gives parents the tools they need to stop wasting unnecessary time, money, and stress. If you need to know how to actually do the things, this book is for you\"-- Provided by publisher.
Book
Exploring the quality of life of school-aged children with disabilities in Saudi Arabia and their educational inclusion: from caregiver’s perspectives
Background
Disabilities limit the children’s ability to use their body freely, fully engage with their surroundings, participate in the community, and access services. These restrictions could adversely impact their academic progress in schools. This study’s primary aim is to report the quality of life of school-aged children and the percentage of children attending schools. A secondary exploratory aim is to report factors related to educational inclusion.
Methods
This study utilized a cross-sectional design using five domains from a validated quality of life tool targeting primary caregivers of children with disabilities. Data were analyzed using descriptive statistics and the Chi-square. 111 respondents met the inclusion criteria.
Results
Regarding the children’s quality of life, less than half of the children feel happy about their interaction with children inside (35%) and outside of schools (39%). More than half of the children (51%) were happy with their interactions with their teachers, and in taking trips with their family (70%), as reported by their caregivers. In the participation domain, caregivers reported that children are happier when they participate in social outings. Most of the children were happy about utilizing their arms (53%), hands (51%), and drinking without assistance(53%). Caregivers stated that about 62% of the children were included in schools, and they were least happy with accessing special needs services in schools. This study also showed possible relationships between some demographic and quality of life factors with including children with disabilities in schools (
p
≤ 0.05). Barriers that limit attending schools were reported.
Conclusions
According to this study findings, the quality of life of children with disabilities is not ideal. Children face difficulties in interacting with their peers, participating in the community, using their body parts, and accessing services. This study provided preliminary data that suggest that not all children with disabilities are included in schools in Saudi Arabia. Although multiple factors were related to inclusion, they should be interpreted with caution. The reported difficulties could lead to unequal opportunities that interfere with the children’s quality of life and educational journey and should be considered to support the needs of children with disabilities.
Journal Article
A world without Martha : a memoir of sisters, disability, and difference
\"Victoria Freeman was only four when her parents followed medical advice and sent her sister away to a distant, overcrowded institution. Martha was not yet two, but in 1960s Ontario there was little community acceptance or support for raising children with intellectual disabilities at home. In this frank and moving memoir, Victoria describes growing up in a world that excluded and dehumanized her sister, and how society's insistence that only a \"normal\" life was worth living affected her sister, her family, and herself, until changing attitudes to disability and difference offered both sisters new possibilities for healing and self-discovery.\"-- Provided by publisher.
Book
Mental health in children with and without disabilities in a register-based Swedish sample supports the two-continua model: a latent class analysis
Background
Mental health is a term frequently used to describe mental health problems. However, mental health includes both mental health problems and well-being. Therefore, mental health can be seen as having two distinct yet related dimensions, as described in the two-continua model of mental health (Westerhof & Keyes, 2010) where an individual can simultaneously experience any combination of well-being and problems, suggesting four classes: (i) high well-being, low problems; (ii) high well-being, high problems; (iii) low well-being, low problems; and (iv) low well-being, high problems. Through this framework an understanding of differences in putative risk and protective factors can be gained when compared across classes. While the model has received support, it is unclear how it applies to children. In particular, children with disabilities, as disabilities pose a risk factor to poor mental health. A greater understanding of similarities and differences between children with and without disabilities, and of risk and protective factors, could help tailor support focused on enhancing well-being, both as a goal and as a means to better self-management of mental health.
Methods
The present project utilizes Sweden Statistics (SCB) study (barnULF) to measure life conditions. Nearly 4000 children aged 10–18, with and without disabilities, and their caregivers (ULF/SILC) were studied through yearly interview-based sample surveys conducted between 2013 and 2019. Latent class analysis was performed to assess whether the data fit a 4-class model in line with the two-continua model. Possible factors influencing mental health, including participation, were compared across the identified classes and between children with and without disabilities.
Results
The analysis confirmed the predicted model. Each class showed distinct features regarding putative risk and protective factors of mental health and demographics in both the child and caregiver. These features differed significantly between children with and without disabilities, especially relating to participation, social bonds, family functioning, digital media use, and perceived safety. Age, disability, and gender predicted class adversity.
Conclusions
The results suggest that mental health problems and well-being are two related but separate constructs, highlighting the importance of promoting participation and recognizing well-being and not just mental health problems when planning interventions. The results also highlight the importance of providing support for not only the child but also their caregiver.
Journal Article