Thesis advisor: Penny Hauser-Cram / This dissertation involves secondary analysis of data from the Early Intervention Collaborative Study (EICS; Hauser-Cram, Warfield, Shonkoff, & Krauss, 2001), a longitudinal investigation of children with developmental disabilities (DD) and their families. The sample includes 93 children with DD and their mothers who participated in the age 10 and age 18 data collection time points of EICS. The following research questions were addressed: What types of friendships and other relationships do adolescents with DD have in their social networks and what individual characteristics predict the presence of reciprocal relationships within these networks? What individual and family-related characteristics predict their loneliness at age 10 and their friendship quality at age 18? Does loneliness at age 10 predict friendship quality at age 18? Do child/adolescent views of the family predict loneliness at age 10 and friendship quality at age 18? Do loneliness at age 10 and friendship quality at age 18 predict adolescent social-emotional well-being? Do child/adolescent views of the family moderate the relationship between loneliness at age 10 and adolescent well-being, or the relationship between friendship quality at age 18 and adolescent well-being? Results revealed the limited nature of adolescents' friendships and peer relationships, particularly in regard to a lack of reciprocal relationships with same-age, non-familial peers. Behavior problems emerged as a significant predictor of loneliness at age 10, while autonomy emerged as a significant predictor of perceived friendship quality in adolescence. Loneliness at age 10 was not found to relate to friendship quality at age 18. Age 10 loneliness and age 18 friendship quality were found to significantly predict adolescent well-being. Adolescent views of the family were found to significantly predict adolescent perceived friendship quality; additionally, adolescent views of the family were found to relate to adolescent well-being outcomes. Overall, the findings support the notion that both family and peer relationships have an impact on social-emotional well-being for children and adolescents with DD. Implications for practice and future research are discussed. / Thesis (PhD) — Boston College, 2013. / Submitted to: Boston College. Lynch School of Education. / Discipline: Counseling, Developmental, and Educational Psychology.

In order to examine the literature on acceptance and mindfulness in parents of children with developmental disabilities a systematic review was conducted. Twelve studies were included in the review and provided some support for the relevance of these concepts in helping to support parents of children with developmental disabilities. However, general study quality was poor and methodological limitations hampered confidence in these findings. Research considerations are discussed. An empirical study was conducted to examine the relationship between psychological acceptance and family quality of life in parents of children with intellectual disabilities. One-hundred and twenty-nine parents of children with intellectual disabilities participated in a questionnaire based study. Participants completed measures of family quality of life, psychological acceptance, emotional adjustment, mental well-being and impact of the child. Parental psychological acceptance was positively associated with family quality of life and was found to account for around 1.9 per cent of its variance. Parental emotional adjustment was also positively associated with family quality of life, however, when parental psychological acceptance was added to the regression model emotional adjustment was no longer a statistically significant variable. The results of this study suggest that parental psychological acceptance may explain some of the variance in family quality of life. Further research is needed to ascertain whether interventions that improve parents' psychological acceptance also improve family quality of life.

With an estimated 1.8 million children born in the US with a developmental disability in the past decade and a 43% increase in the Latino population in the same time period, there are more Latino parents who have children born with a developmental disability than ever before. Due to factors such as language barriers and legal status, Latino parents of children with developmental disabilities tend to experience higher needs. This study explored the challenges and needs Latino parents faced when caring for a child with special needs. The design of the study was qualitative. Participants were a convenience sample of nine Latino women who had a child or children with a developmental disability. Results of the study suggested that there was a large need for more parental education regarding developmental disabilities, support groups, and a larger variety of services and programs available to both parents and children. Increased length and frequency of services were also identified as needs. The most common barriers to the accessibility of programs and services for Latino parents were language barriers and legal status. Other findings discussed focus on the programs and services that parents have found beneficial as well as the role social workers play in the accessibility and attainability of programs, services and resources.

The present study explored advance year Master of Social Work (MSW) candidates and graduated social workers perceived preparedness to serve individuals with developmental disabilities (DD). There has been minimal of studies that have explored perceived preparedness in serving individuals with DD, more specifically in the field of social work. Due to the lack of research on the topic and the recent growth of the DD population, the present research was an exploratory project that utilized qualitative techniques. Data was collected through face-to-face interviews that analyzed advance year Master of Social Work candidates and graduated social workers perceived preparedness serving individuals who are developmentally disabled. The findings of this study suggested that Master of Social Work candidates and graduated social workers are not prepared to serve the DD population. Based on the qualitative analyses, four themes emerged about social workers serving the DD population. The implications of this study include the need for reevaluation of the Council on Social Work Education accreditation standards and ethical standards put forth by the National Association of Social Workers (NASW).

This thesis examines the experiences of parents who are raising their adopted children who have Fetal Alcohol Effects (FAE). Four married couples, and one single mother, who married after she had raised her sons participated in this study. All are white and middle or upper-middle class. Five adoptive mothers and one adoptive father were interviewed, while their spouses contributed to the study by reviewing the interview transcripts, and discussing issues raised within them. Eight children with diagnosed or suspected FAE are discussed. They are Cree or Saulteaux, and are between the ages of nine and 23 . Through multiple in-depth interviews, and the demographic profile form, richly detailed information was recorded on these families' day-to-day lives: the children's school experiences, learning disabilities and behaviour problems, their strengths, their health and interactions with peers; parents' interactions with professionals, treatments and behaviour management strategies they sought or devised, their use of support groups and other forms of social support and encounters with the criminal justice and mental health systems. <p> Grounded theory methodology was used to analyse the data and a conceptual model was constructed to outline the process of redefining parenting which describes the practical and psychological tasks parents perform as the family evolves over time. A central role is taken by the mothers who become advocates for their children as they undertake a quest for the meaning of their children's behaviour, seek a diagnosis, and try to secure services for them. It was found that people with FAE are misunderstood and misdiagnosed because of their anomalous nature, which often leads to stigmatisation. This thesis attempts to dispel these misconceptions, document the parents' and children's struggles, and identify the types of services these families desperately need.

Sibling relationships in families of children with disabilities are generally positive despite difficulties that may result from the child’s disability. Many developmental disabilities have associated communication impairments that could affect how siblings interact with each other and the closeness between them. Research has rarely addressed the role of communication skills and how potential deficits in communication may impact the sibling relationship. The purpose of this study is to examine the characteristics of sibling communication interaction patterns when one sibling has a developmental disability and the unique role that communication skills play in the quality of the sibling relationship using both self-report and observational measures. Participants were 30 mixed and same-sex sibling dyads that included one typically developing sibling and their brother or sister with an identified developmental disability. Using parent report, children with disabilities were placed into three communication status groups according to their communication skills: emerging communicators, context-dependent communicators and independent communicators. Results indicated that when children with disabilities were independent communicators, they exhibited interactions with their siblings that were similar in terms of lexical complexity but that regardless of communication status, typically developing siblings dominated the interaction. All three communication groups differed significantly on measures of relative status/power with siblings of children who were independent communicators reporting highest levels of relative status/power. Additionally, receptive vocabulary was a significant predictor of relative status/power and proportion of intelligible utterances was a significant predictor of rivalry. Finally, although typical siblings acknowledged that their relationship would be different if their sibling with a disability had different communication skills, it did not lessen the importance of that sibling in their life. As a whole, these results represent a first step in understanding the unique role of communication skills in the sibling relationship for families of children with disabilities. It established that when children are grouped together according to their communication abilities, findings regarding relative status/power are different than what would be expected based on literature. Communication and language skills are important variables to add to the literature to further elucidate the sibling experience in families of children with disabilities.

Sibling relationships in families of children with disabilities are generally positive despite difficulties that may result from the child’s disability. Many developmental disabilities have associated communication impairments that could affect how siblings interact with each other and the closeness between them. Research has rarely addressed the role of communication skills and how potential deficits in communication may impact the sibling relationship. The purpose of this study is to examine the characteristics of sibling communication interaction patterns when one sibling has a developmental disability and the unique role that communication skills play in the quality of the sibling relationship using both self-report and observational measures. Participants were 30 mixed and same-sex sibling dyads that included one typically developing sibling and their brother or sister with an identified developmental disability. Using parent report, children with disabilities were placed into three communication status groups according to their communication skills: emerging communicators, context-dependent communicators and independent communicators. Results indicated that when children with disabilities were independent communicators, they exhibited interactions with their siblings that were similar in terms of lexical complexity but that regardless of communication status, typically developing siblings dominated the interaction. All three communication groups differed significantly on measures of relative status/power with siblings of children who were independent communicators reporting highest levels of relative status/power. Additionally, receptive vocabulary was a significant predictor of relative status/power and proportion of intelligible utterances was a significant predictor of rivalry. Finally, although typical siblings acknowledged that their relationship would be different if their sibling with a disability had different communication skills, it did not lessen the importance of that sibling in their life. As a whole, these results represent a first step in understanding the unique role of communication skills in the sibling relationship for families of children with disabilities. It established that when children are grouped together according to their communication abilities, findings regarding relative status/power are different than what would be expected based on literature. Communication and language skills are important variables to add to the literature to further elucidate the sibling experience in families of children with disabilities.

This thesis examines the experiences of parents who are raising their adopted children who have Fetal Alcohol Effects (FAE). Four married couples, and one single mother, who married after she had raised her sons participated in this study. All are white and middle or upper-middle class. Five adoptive mothers and one adoptive father were interviewed, while their spouses contributed to the study by reviewing the interview transcripts, and discussing issues raised within them. Eight children with diagnosed or suspected FAE are discussed. They are Cree or Saulteaux, and are between the ages of nine and 23 . Through multiple in-depth interviews, and the demographic profile form, richly detailed information was recorded on these families' day-to-day lives: the children's school experiences, learning disabilities and behaviour problems, their strengths, their health and interactions with peers; parents' interactions with professionals, treatments and behaviour management strategies they sought or devised, their use of support groups and other forms of social support and encounters with the criminal justice and mental health systems. <p> Grounded theory methodology was used to analyse the data and a conceptual model was constructed to outline the process of redefining parenting which describes the practical and psychological tasks parents perform as the family evolves over time. A central role is taken by the mothers who become advocates for their children as they undertake a quest for the meaning of their children's behaviour, seek a diagnosis, and try to secure services for them. It was found that people with FAE are misunderstood and misdiagnosed because of their anomalous nature, which often leads to stigmatisation. This thesis attempts to dispel these misconceptions, document the parents' and children's struggles, and identify the types of services these families desperately need.

Syftet med studien är att undersöka hur verksamma pedagoger inom grundsärskolan arbetar med formativa bedömningsprocesser. Frågeställningen handlar om hur pedagogerna synliggör kunskapskraven för elever som har en utvecklingsstörning, hur de följer upp elevernas lärprocesser samt vilka verktyg de använder i det formativa arbetet med eleverna. Jag har genom semistrukturerade intervjuer undersökt hur verksamma pedagoger tänker kring kunskapsbedömningen i grundsärskolan, hur de utmanar eleverna och vilka förutsättningar eleverna ges för att utveckla sina förmågor. För att finna svar på studiens frågeställning har jag tagit del av litteratur kring formativa arbetsprocesser samt intervjuat fyra pedagoger inom grundsärskolan som alla har en lång erfarenhet inom skolans värld.   Studiens resultat visar att det arbetas på ett formativt sätt där elever på olika sätt får vara en del i sin kunskapsinhämtning men vad det gäller att analysera resultat, utvärdera och förändra undervisningen var det ingen pedagog som använde sig av detta för att förändra sin undervisning. Resultatet visar också att rektor och huvudman har en stor del i hur det arbetas i grundsärskolan kring formativa bedömningsprocesser. Hur rektorer organiserar sin verksamhet för att det ska ges förutsättningar för kollegialt lärande och samsyn avspeglar sig på pedagogernas syn på delaktighet för eleverna.   Min uppfattning är att för att arbeta formativt med elever på grundsärskolan behöver pedagogerna få en större förståelse för att hur de kan använda alla sina goda exempel och insamlat material kring eleverna på ett mer effektivt sätt genom att analysera dessa, ta hjälp av kollegor och genom att tillsammans reflektera för att därutifrån förändra undervisningen. Detta gör att det kan hittas nya vägar att få elever med en utvecklingsstörning mer delaktiga i sin kunskapsinhämtning. / The purpose of this study is to investigate how educators in the special school use formative assessment processes. The research question is about how teachers reveal the Syllabus for students who have learning disabilities, how they follow up the students´ learning processes, and which tools they use in the formative work with the pupils. Through semi-structured interviews this study investigate the educators views of assessment in special schools, how they challenge students, and what prerequisites the students are given to develop their abilities. To answer the research question, I have studied the literature on formative work processes and interviewed four educators in special school who all have long experiences of teaching.    The findings show that formative assessment is used and the students are involved in their learning processes in different ways. However, none of the interviewed used formative assessments when it came to analyzing results, evaluate, and change their teaching. Additionally, the result reveals the importance of the principal and the headmaster regarding how formative assessment is used in special school. The teachers’ point of view about pupils´ involvement is affected by how the principal manages the organization to peer learning.   My opinion is that teachers working formatively with students at special school need better understanding of how they may use examples and collected information. This may be done more efficiently by analyzing these, collaborate with colleagues, and together reflect on opportunities to develop the education. Thus, new ways to make students with development disabilities more involved in their learning processes can be found.

Individuals diagnosed with developmental disabilities often lack the skills needed to gain meaningful employment in the community. One crucial skill is interviewing as this is the first and often the only pre-job interaction an individual has with his or her employer. In a short interaction, the person must convey information about specific work history, employability, and a general impression of character. This study evaluated the effectiveness of video feedback in improving job interview behaviors for three young adults with developmental disabilities. The interview related-behaviors were appropriate greeting, responses to interview questions, and appropriate closing statement. The performance across the participants was assessed in simulated interviews under a multiple-baseline design across behaviors and participants, with all participants reaching 100% correct performance of all three behaviors after video feedback was implemented. The social validity supports the feasibility of this video feedback intervention. Issues related to future research and implications for the field are discussed.