Parenting,autism spectrum disorders and inner journeys

The importance of Early Intervention for children with Autism has been established however little attention has been given to the role of the parent and their perspective (Griffin & Shevlin, 2011). Research on Early Intervention has proliferated and innovative research on involving parents as partners has emerged (Carpenter, 2007; Hornby, 2011), however parents’ experiences of assessment, diagnosis and education have received little attention. This study investigated parental perceptions of Early Intervention services for children with significant disabilities. The purpose of this article is to describe how parents experience assessment, diagnosis and education, exploring the potential of utulising a parental lens in grasping these perspectives. It explored parents’ need to negotiate services and the difficulties surrounding their children's education in mainstream settings. Through qualitative, longitudinal, in‐depth case studies, parents (n 6) were interviewed over a fifteen month period. Interviews coincided with school terms. A major point of difference is the presence of parent voice. This research is dedicated to eliciting parents’ voice and exploring how this may influence current understandings of Early Intervention in Ireland. This research suggests that we need to explore what is needed by parents according to those parents, by acknowledging parent voice. Early Intervention and school settings may be a site of reconfiguration of parenthood where mutually, supportive mechanisms may confront the obscurities associated with their role and the fact that they are seldom heard.     

An evaluation of the special needs referral process for low-income preschool children with emotional and behavioral problems

The present study is an evaluation of the special needs referral system in a large urban Head Start program. To assess the validity of this system, two assessments were conducted. The first examined a representative sample of 105 children who were formally referred for special needs services. The Early Intervention Screening Profile (EISP) was used to indicate the distribution of problem behaviors of these special needs children. Two independent raters evaluated all cases. Reliable evaluations revealed that all of the referred children displayed speech and language problems, with 70% showing only speech problems and 30% showing speech plus emotional and behavioral problems. The second assessment examined reports of teachers’ concerns about children program-wide by obtaining a representative sample of 203 children nominated by teachers as most likely to be identified as having special needs. Teachers completed a modified EISP. Results indicated that over 70% of the children evidenced emotional and behavioral problems with no accompanying speech difficulties and 30% displayed emotional and behavioral problems plus speech problems. Implications of referral biases were discussed.     

Attitudes of parents towards inclusive education: a review of the literature

The aim of this study is to review literature about parents’ attitudes towards inclusive education. Special attention is paid to parents’ attitudes and to the effect of these on the social participation of children with special needs in regular schools. A review of the literature resulted in 10 studies showing that the majority of parents hold positive attitudes. However, parents of children with special needs reported various concerns, including the availability of services in regular schools and individualised instruction. Several variables were found which relate to parents’ attitudes, such as social‐economic status, education level, experience with inclusion and type of disability. No studies examined the effects of parental attitudes on the social participation of children with special needs. The importance of positive parental attitudes is elaborated in the discussion.     

Recent research

Specialized programs designed to meet the unique needs of young gifted children are increasing in number. Parents of this population are becoming involved in the development of these programs. This study examined expectancies, concerns and current issues as perceived by parents of children identified as gifted at an early age. Additionally, parents expressed roles in which they would be willing to serve in the planning and delivery of services for their children. Curriculum preferences, availability and lack of services available or desired, support of full or half‐day programs, and specific information areas requested by the parents are presented.     

PARENTAL FEARS AND EXPECTATIONS FROM THE POINT OF VIEW OF A COUNSELLING CENTRE FOR THE GIFTED

During the last five years the counselling centre in Hamburg has dealt with the identification, counselling and offering of special provision to gifted children aged from 5 to 17. More than 300 children and their parents have been individually interviewed, particular attention being paid to the childrens’ motivational, social, and emotional difficulties in school. Various counselling strategies have been adopted, while a number of concerns and expectancies of parents, according to the children's different IQ levels, have become apparent. Early identification and special provision for the gifted are of particular importance.     

Increasing programme effectiveness through parent empowerment: the Getting Ready for School project in Tajikistan

Within the development studies framework, empowerment involves increasing individual agency vis-à-vis the formal and informal opportunity structure. The Open Society Foundation's Early Childhood Programme developed the Getting Ready for School programme specifically for parents of preschool-age children to use at home in the year before school to build early math and literacy skills in their children. In Tajikistan, parents met on a regular basis with teachers in their local schools to learn activities to use with their children at home. Focus group reports indicated that parents gained knowledge and self-confidence as a result of programme participation, considered foundational aspects of the empowerment process. Responses also demonstrated that parents displayed characteristics of empowerment as they used programme activities and skills not only with their six-year-old child, but with siblings, extended family members and community children. They also shared the skills they learned with family members and neighbours.     

Parents' concerns about children with specific learning difficulties: insights gained from an online message centre

Major developments in the use of the internet have enabled easy and widespread access to information and the ability to form virtual social networks. For parents of children with developmental disorders, who may at times feel isolated, having a forum to discuss their fears and concerns with other parents who are sharing similar experiences may provide a source of support and advice. Waiting lists for assessments, including for children with developmental co‐ordination disorder (DCD), remain in many areas; a professionally supported message centre could also add an additional level of service and empowerment for these parents. This could potentially reduce the need for unnecessary assessment in some cases and help to bridge the information gap between health and education. The Dyscovery Centre message board has been established for over four years and has seen increasing usage during that time. This paper aims to explore the range, frequency and types of concerns that parents of children with specific learning difficulties express when accessing the message board. The impact of this type of support is discussed. The paper then explores how this approach and other online strategies can effectively run alongside more traditional services in both health and education.     

A tool to record and support the early development of children including those with special educational needs or disabilities

Early intervention is key for children with special educational needs or disabilities (SEND), and therefore early assessment is crucial. Information from parents about children's current ability and their developmental history can make valid and useful contributions to developmental assessments. Parental input is also important in early education for children with and without SEND. In England, recent changes to statutory guidance for early education highlight partnership working with parents, progress checks and continuous observation. The Early Years Developmental Journal (EYDJ), an Early Support tool primarily aimed at families, aims to support early identification and assessment for children with SEND and early education for all children. The article describes Early Support to provide a backdrop and then outlines the purpose, structure and rigorous development process of the EYDJ. Use of the EYDJ to support parents, early years education practitioners, health visitors, developmental assessments and the forthcoming English special educational needs (SEN) reforms is also described.     

Transition planning and the needs of young people and their carers: the alumni project

Melanie Smart is a research associate at Sunfield School, Worcestershire, and a trainee clinical psychologist. In this article, she reports the results of a small-scale survey which looked at the views of 17 parents whose children with severe and/or complex learning difficulties had made the transition from a residential special school to an adult placement. Pa rents were asked their retrospective views on the transition planning process; their own involvement; and how the adult placement met the needs of their children.
Melanie Smart's findings indicate that the majority of parents were very much involved in the planning process, although they reported struggling to get consistency of approach and basic information. The young people themselves were found to be marginalised in the planning process, with very few being involved in any decision making. Most parents were happy with the eventual placement, but those who had concerns were still pushing for basic services and care. Of those who had suffered placement breakdowns, the major factor was lack of consistency of approach and failure to use prior information about the child.
This survey shows that parents and their learning disabled children experience difficulties in the transition process. There seems to be a distinct lack of person-centred planning, particularly with this user group, by both child and adult services. Parents are vital to this type of planning approach, particularly when the young people themselves cannot voice their needs or advocate their own rights to quality service provision. Melanie Smart argues that parents need access to better quality information and reassurance that their children will receive the services they deserve as young adults. The various agencies, she asserts, need to work together to ensure that the transition process is effective.     

Addressing Disparities in Parent Education: Examining the Effects of Learn the Signs/Act Early Parent Education Materials on Parent Outcomes

Early intervention is critical for improved prognosis and quality of life for young children with developmental delays and disabilities. Yet, disparities persist among underserved families with young children. These disparities include knowledge of child development, use of medical providers as referral sources, and later diagnosis. The current study employed a mixed method, randomized controlled trial to examine participant outcomes among low-income, underserved families who received child development information. The information included the 42-page Milestone Moments booklet that was developed by the Centers for Disease Control and Prevention’s Learn the Signs/Act Early initiative. Participants (n = 108) included parents or legal guardians of children ages birth through 5 years. The participants were predominantly Black/African American (86 %) and female (90 %), and all had incomes below the federal poverty level. Study variables related to the location (home vs. child care center) and context (single session vs. extended visits) for delivering the information did not yield significant differences. Yet, there were clear findings that parents who received the booklet reported increased knowledge about child development, a decrease in concern about their own children’s developmental progress, and a positive perception of the booklet. On interview, parents reported learning new information about child development or being reminded of developmental information they had forgotten and the importance of following up with professionals when concerns arose. While not statistically significant, there was a consistent trend toward greater participant outcomes for parents who received materials in the child care setting relative to the home.     

The swinging of a pendulum

This paper reports on the findings of a funded research project that explores the implementation of the Every Child Matters (ECM) agenda within the Greater Merseyside area. The research team explore how primary schools and external agencies are currently working together to deliver this agenda in order to highlight areas of good practice as well as potential sites of conflict. The aim is to develop an effective response to the challenges currently faced by schools and other agencies in meeting the requirements of the principles underpinning the ECM agenda. The research project implemented a mixed-method case-study approach, using questionnaires, policy documentation and stakeholder interviews as data sources. Responses were elicited from members of school staff, parents and professionals from the education welfare, health and social services to gauge their perceptions of how well they felt schools and agencies were responding to the challenges of implementing the ECM agenda. There is strong evidence of effective multi-agency working, particularly in relation to children who are ‘at risk’ or have special educational needs, and in terms of contributions to the curriculum and life of the school for all pupils. There are also clearly identified areas for further development, for example on shared operational frameworks. There are also concerns that poor resourcing and a lack of practical support could hamper the embedding of reforms.     

Brokering to support participation of disadvantaged families in early childhood education

This paper discusses findings from an evaluation of the New Zealand Ministry of Education's Early Childhood Education (ECE) Participation Programme that targeted local areas where there are high numbers of children starting school who have not participated in ECE. The aim of the programme is to increase participation of these low‐income ‘priority’ children in ‘quality’ ECE. In this paper, two policy initiatives and features that supported participation in ECE are analysed. Engaging Priority Families (EPF) involves a coordinator working with families to encourage ECE participation, home learning and a positive transition to school. Targeted Assistance for Provision (TAP) grants are intended to increase local supply by helping establish new services and child spaces in communities where they are needed. The study used mixed methods: data on enrolments, surveys of Participation Programme providers, interviews with programme staff, surveys of families engaged in each initiative and interviews with a small group of families. The results show that cost, availability and cultural relevance of ECE services are the main barriers to participation of ‘priority’ families. Through brokering, both initiatives helped address complex social issues faced by the families by connecting families with health, housing and social agencies, and brokering understanding of ECE. The results support the argument that national policy initiatives and local actions can help address inequities in participation in ECE associated with socioeconomic status.     

Measuring the Quality of Early Intervention Services for Infants and Toddlers: Problems and prospects

Comparable scales to measure quality of early intervention services for infants and toddlers as perceived by parents and service providers were developed based on the Recommended Practices in Early Intervention. Each scale consisted of four subscales focusing on: home-based therapies/instruction, centre-based therapies/instruction, medical/ health services, and service coordination. The scales were administered to 209 parents and 177 of their service providers. A sample of 24 parents completed the instrument twice during a two-week interval to assess test-retest reliability of the parent scale. Test-retest reliability for the parent scale was .785. Validity of the scale was assessed by examining the correlation of parent and provider perceptions of quality with family demographic and early intervention service characteristics. Parents' perceptions of quality were related to family centredness of services. Neither parents' nor providers' perceptions of quality were related to family socioeconomic status. Problems and prospects for measuring quality of early intervention services are discussed.     

Student parents,hardship and debt: a qualitative study

To date little is known about the effects of financial hardship on student parents, who remain a significant although largely unrecognized proportion of the student population. The objective of this study was to gain an insight into their concerns and illuminate issues which may have far‐reaching consequences not only for the mental and physical health of student parents but also for their children. Interviews were conducted with 12 women who are parents balancing home life with studies and, in some cases, work. Questions were directed at obtaining information relating to both direct and indirect pressures of financial hardship on home and family life. Questioning covered eight topics: change in lifestyle; financial situation; work; sacrifices—financial or otherwise; financial resources; financial impact on mental or physical health; impact on children; doubts over worth of study. For the majority, financial adversity affected their psychological well‐being. In many cases parents reported that their own stress adversely affected their children. Questions were also raised regarding parents' ability to meet the dietary needs of their children. Quality of home and family life also suffered as a consequence of financial hardship. Students' reflections on their experiences offer a clear insight into the emotional costs of further education exacerbated by financial hardship for both them and their family.     

The student profile,service delivery model,and support practices of four early childhood intervention environments in Singapore

The student profile, model of service delivery, and support practices for young children with disabilities receiving early childhood intervention (ECI) in Singapore is reported and contrasted in this study. The supervisors/managers/principals of eight Early Intervention Programme for Infants and Children (EIPIC) centres, eight Integrated Child Care Programmes (ICCP), six privately run ECI centres, and 65 preschools participated in this study. Overall, autism spectrum disorder was the most commonly reported diagnosis in this study. EIPIC and privately run ECI centres supported mostly children with disabilities (frequently those with more severe disabilities) and provided more specialized education and therapy support, whereas ICCPs and preschools educated them alongside typically developing peers. EIPIC centres provided the most resource and teacher support for young children with disabilities. Issues pertaining to the reported rates of disabilities among the young children and support models/practices are discussed.     

Guidance and research centers of Turkey: from the perspective of parents

Active participation of parents in every step of their children with special needs’ education is crucial, and it begins with the educational assessment of the children. The parents experience with the professionals who are responsible of assessing children’s abilities might be crucial for the services that will be provided for the children with disabilities. The Guidance and Research Centers (GRCs) of Turkey are the key organisations for the services for children with special needs. This study focused on identifying the experience of the parents at the GRCs and applied qualitative research principles. The findings showed that the parents have reflected both positive and negative experience, but the majority focused on negative experiences. It might be drawn out that GRCs must be improved from several perspectives.     

The challenge of caring for mildly ill children: a Canadian national childcare study

This Canadian study of the care of mildly ill children in licensed childcare facilities compares director and parent preferences for eight models of care, exclusionary practices for ill children by directors, and preferred backup care options of parents. It also investigates anticipated usage and willingness of parents to pay for emergency childcare. Participants include 328 directors and 742 parents from center and family childcare (FCC) homes, rural and urban locales, and five provinces. Parents and directors favor “joint family-employer” and “extended family” models and least prefer “infirmary” and “special licensed” childcare models. Directors favor more strongly than parents the options of parents or relatives caring for ill children and are less supportive than parents of facility-based models. Directors usually exclude children with diarrhea, fever and lethargy but accept children with a runny nose or cough. For backup care, parents prefer themselves or extended family. Most parents would use emergency childcare services but are unwilling to pay beyond the normal childcare rate. This investigation identifies key areas in the care of mildly ill children to be examined further through prospective studies.     

The impact of an early intervention home visiting experience on student learning in a dual early childhood/special education graduate preservice program

Home visiting is a primary service delivery approach to promote young children’s development and support families. Early Intervention professionals are expected to partner with families to create effective learning experiences in the daily context of routine family life. Concerns about early childhood (special) educators’ readiness to take on this partnership role have been voiced, suggesting explicit learning opportunities are needed within preservice preparation programs. This study explored the impact of an introductory assignment analyzing a videotaped home visit on preservice Early Childhood Education/Early Childhood Special Education students’ learning about home visiting practices. Implications for scaffolding home visiting experiences in preservice preparation are discussed.     

Effects of family support intervention: a ten-year follow-up

The delivery to impoverished mothers of a coordinated set of medical and social services, including day-care for their children, had effects that were evident a decade after the intervention ended. Intervention mothers were more likely to be self-supporting, and they had higher educational attainment and smaller family sizes than did control mothers. Intervention children had better school attendance, and boys were less likely to require costly special school services than were corresponding control children. The financial implications of these results were considerable, totaling about $40,000 in extra estimated welfare costs and documented school service costs needed by the 15 control families in the single year in which these follow-up data were gathered. There were no indications that the intervention had lasting effects on the children's IQ scores. The results suggest that family support procedures, including quality day-care, have considerable promise as a general model for intervention programs.     

A journey of self‐discovery: an intervention involving massage,yoga and relaxation for children with emotional and behavioural difficulties attending primary schools

This study reports on an intervention involving massage, yoga and relaxation delivered to young children with emotional and behavioural difficulties. Children (n = 126) were invited to participate in the Self‐discovery Programme (SDP) with parental consent. A total of 107 children aged 8–11 years completed the SDP and all measures. Children were allocated to a Control (n = 54) or Intervention (n = 53) group. The results indicate that children in the Intervention group showed improvements in self‐confidence, social confidence, communication and contributions in class. Children in the Intervention group were noted by teachers to use skills learned on the SDP during the school day.