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Table of contents

The effects of Fragile X on learning Marcia Braden; 7. School placement and provision Denise Dew-Hughes; 8.

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Formal assessment and constructing an individual education profile Marcia Braden; 9. Key issues in assessment Charles Gibb; Obtaining educational support for a child with special needs: A structured approach for parents and teachers Kate Schnelling and Denise Dew-Hughes; Part 3: Education strategies; Classroom adaptations: Good practice and work habits Marcia Braden; Home and school: Developing a genuine partnership Claire Wolstencroft; Classroom strategies for Fragile X and autism Julie Taylor; Speech and language therapy Cathy Taylor; Occupational therapy and sensory integration therapy for individuals with Fragile X syndrome Dido Green; Part 4: Development, Behaviour and Psychology; Development in the early years Kim Cornish and Gaia Scerif; Behaviours and management Jeremy Turk; Medication matters Jeremy Turk; Part 5: Family and social matters; Behaviour and cognitive profiles in adults Kim Cornish; Women with Fragile X Lesley Powell; Du kanske gillar.

Results: Although not a focus of interview questions the theme of traumatic experiences arose. Parents receive little or no support for themselves from statutory provision, frequently relying on parents support groups. This paper contests that more effective support to parents, where they are given space to acknowledge and process their feelings without judgement, preferably in a social setting with others in similar situations, would be beneficial to parent and child.

Introduction: Families of children with developmental disabilities are often at greater risk of multiple psychosocial problems. Even though evidence has shown that interventions focusing on families of children with developmental disabilities are effective, there is a lack of research in the measurement of family functioning in children with developmental disabilities in Singapore. Approval for the study was obtained from the special education school's management board.

Methods: Established measures for assessing constructs in family related variables in 35 families were used in this study. Implications: Research findings are further discussed and suggestions are put forth to improve family functioning in families of children with developmental disabilities. Methods: Established measures for assessing constructs in the areas of family functioning were used in this study. Pearson's product moment correlation, Analysis of variance and hierarchical multiple regression analyses were used as statistical techniques in this study.

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Results: Results indicated that there were significant associations between family functioning and behaviours in children with developmental disabilities. Next, disability type had a significant impact on levels of family functioning. Family functioning was also predicted by the various family constructs.

Implications: Research findings are further discussed and suggestions are put forth to improve functioning in families of children with developmental disabilities. Introduction: Parents of children with developmental disabilities are known to experience elevated levels of stress. The objectives of the study were twofold: 1 to determine the effects of parental involvement and children related variables e.

Also, the multiple regression analysis revealed that surprisingly, the severity of the child's problem behaviour is not the best predictor for parental stress. Implications: Since parental stress affects parents and children as well as the quality of parent and child relationships, it is henceforth a crucial component that should be considered in behaviour management and intervention programs.

Introduction: Signposts For Better Behaviours is a parenting programme designed to equip caregivers with strategies on understanding and managing the behaviours of their child with developmental or intellectual disability. This exploratory study was conducted with caregivers whose child has moderate to severe intellectual disability in Singapore. Their experiences and perceptions towards the Signposts programme will be examined to identify key factors that impacted their participation and continued engagement throughout the programme. Methods: This qualitative study examined the views of 3 caregivers who attended the programme.

Results: Emerging themes concerning programme, caregiver, and service factors will be presented, and illustrated with participants' quotes to support the analysis. Implications: Findings will clarify factors that facilitate or hinder caregivers in continuing to stay engaged throughout the programme. Recommendations will be made to inform professionals conducting similar programmes on how to better cater to the needs of caregivers to improve their participation and commitment in parenting programmes.

Gallagher 1 , J. Finlayson 2 , A. Dickson 2 and M. Kettle 2. Introduction: Transition to adulthood for a young person with an Intellectual disability ID is a key area of concern, from planning care and support to the impact on the young person and their parents. The aim of this critical literature review was to learn what is currently know about the perceptions and experiences of parents on their child's transition.

Methods: Sixteen databases accessed via ProQuest and EBSCO were searched systematically, to identify papers published over the last 10 years on parents' experiences. The search yielded 31 relevant papers. Results: The review identified three distinct themes on parents' experiences. These were 1 Parents experiences of service provision for their children, 2 impact on their caring role, and 3 how parents perceive their children's move towards independence. Parents themselves appeared to be in transition. A potential conflict between parents' perceptions and experiences of their child with IDs actually becoming independent adults, and policy and service providers mission towards inclusion and independence for people with IDs, was highlighted.

Further research which recognises the role of the parent as expert in their child's life journey is warranted. Introduction : The transition to adulthood is a critical moment for families of youth with disabilities.

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Although interest in this transition has increased, few studies have focused on the needs of families of young people with Fragile X syndrome. Moreover, this syndrome is often associated with intellectual disability and autism spectrum disorder, thus creating specific needs that must be documented to provide better interventions when planning transition. Objective : The purpose of this study was to document facilitators and barriers to transition planning as well as to describe the experiences of parents during this period, depending on the parents' perspective.

Methods : Individual interviews were conducted with thirteen parents of young people with Fragile X syndrome. Two members of the research team evaluated the interviews separately. Results : Several multisystemic factors targeting material, informative, cognitive, and emotional support seem to influence the transition to adulthood. These factors contribute to the great difficulties of families who are experiencing a lot of anxiety and frustration due to lack of support.

Implications : Understanding the reality of people with Fragile X syndrome and their families will help to develop concrete actions for future projects. Introduction: To support caregivers of children with IDD in understanding the special education system and exercising their legal rights, the field of special education advocacy has emerged.

Methods: In this study, we evaluated the perceptions of participants caregivers and professionals who completed the Volunteer Advocacy Project VAP , a special education advocacy training. Regardless of role, participants perceived warmth, competence, and grit to be necessary attributes of successful advocates. Implications: These findings have important implications.

Additionally, to meet caregivers' goals, advocacy training should include a focus on systemic advocacy e. For policy, given that many VAP trainees reported a desire to advance their careers and become professional advocates, there is a need for clearer guidelines in the US regarding the roles of advocates in the special education process. Finally, additional research is needed to understand the impact of advocate attributes on family and child outcomes.

The current investigation aims to examine economic, psychological and social aspects among households of families of children or adults with intellectual disabilities in Israel. Methods: A national sample of households was recruited through education and employment settings of persons with intellectual disability.

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Results: Findings indicate significant gaps in financial aspects between households of families of children with intellectual disabilities and households of the general Israeli society. Parents experience high stress, low social participation, low financial social support and decreased quality of life. Path analysis indicated that allowances, services and benefits contribute to increased quality of life by increasing financial resilience, social participation and reducing stress. Hare 1 , E. Medford 2 , K. Carpenter 3 , O. Ambler 4 , S. Jones 5 , S. Rust 5 , D.

Smith 6 and A.

Wittkowski 4. PKU is identified at birth with parents assuming responsibility for dietary management. Three main themes were identified from the interviews, control, striving for normality and acceptance.


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Introduction: UK austerity policies of the last decade have resulted in cuts and changes to services for people with IDD, potentially leading to deficiencies in their social lives. This aspect of a wider study is to provide empirical evidence regarding the experiences of parents of people with IDD. Results: Findings suggest that the nature of relationships with some providers and funders has changed from collaborative to combative. Introduction: The purpose of FINDS is to understand the experiences of families who provide support to a family member with intellectual or developmental disabilities.

Factors related to caregiver challenges, needed support, and resilience will be presented. Caregivers who were family members or friends of people with IDD and who provided support were invited to participate in this survey. Analyses include descriptive statistics as well as regression analysis to understand predictive variables leading to caregiver outcomes. Results: 3, people participated in this survey. Individuals from every state in the U.

FINDS participants reported providing supports for longer periods and of greater intensity than caregivers of other populations. Despite numerous challenges related to caregiving, caregivers also report characteristics and outcomes related to resilience. Supporting family caregivers is important as the United States faces an aging population and a direct support workforce crisis.

Introduction: The study explored family caregivers' responses attitudes, actions, behaviours, thoughts to the sexuality of young adults with mild to moderate intellectual disabilities ID. This paper focuses on implications of these responses to the young adults' opportunities for community participation. The methods of data collection were individual and focus group interviews. Due to the family caregivers' anxieties and concerns about the implications of the young adults' sexuality on the young adults and on the family caregivers' caring role, the young adults were either confined to their home with no or very limited social contact or only allowed to move around when in the company of the caregivers.

Implications: There is profound need for services that support both the young adults in the area of sexuality and also support the family caregivers both at emotional and practical care level. Ethics of care theories need to complement the current human rights approaches to sexuality of people with ID. Federal government funding covers reasonable and necessary disability related support to help achieve their desired outcomes.

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Its focus is person centred planning with individuals identifying their own goals. This study investigated adults with intellectual disability and their families' perceptions of NDIS planning in Queensland and its impact on their lives. Methods: Semi structured interviews were conducted with 20 families with an adult with an intellectual disability and focus groups were held with 4 adults with intellectual disability.

The qualitative data from the interviews and focus groups were analysed using content and thematic analysis. Results: Participants reported there was more choice and control, however in rural areas there was difficulty locating services. Parents indicated an increase in their workload.


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Adults with intellectual disability were working towards building employment, communication and independent skills.