[Down Syndrome: Perception of Mothers and Fathers About Parenting a Child with Intellectual Disability]. / Down-Syndrom: Auswirkungen auf die Familie aus Sicht von Müttern und Vätern.

Down Syndrome: Perception of Mothers and Fathers About Parenting a Child with Intellectual Disability Parents of children with intellectual disabilities report increased stress levels as well as experiences of personal growth and a positive impact on family relationship. 30 mothers and fathers of children with Down syndrome in school age complete questionnaires on the family impact of childhood disability, parental stress and child behavioral symptoms. Mothers as well as fathers report more positive than negative perceptions of the impact on the family. Negative impact is associated with the subjective level of stress. Mothers report more symptoms of stress than fathers. Behavioral problems of the child - as perceived by the parents - does not appear as a significant predictor of parenting stress in this sample. The results of a regression analysis suggest a significant contribution of paternal stress to the level of maternal stress. The results may help to understand family coping processes in the case of Down syndrome.

Fathers of Deaf and Hard-of-Hearing Infants and Toddlers - Experiences, Needs, and Challenges.

Studies on fathers with deaf and hard-of-hearing (DHH) children are quite rare in deaf education; if they are conducted, they narrowly focus on preschool-age or school-age children. The study reported here presents data from a survey on 92 fathers of very young DHH children with a mean age of 26 months. Questionnaires were used to measure the impact of children's hearing loss on parenting, the frequency of fathers' participation in early intervention appointments, and the level of fathers' involvement in daily care as well as in early intervention activities. Furthermore, information on fathers' perceived support from early intervention agencies, general self-efficacy, parenting self-efficacy, and marital satisfaction was assessed. The results confirmed data from other studies addressing fathers with children who have a disability. In particular, a strong relationship between parenting self-efficacy, perceived support by early intervention agencies and activities, and impact of child's hearing loss on parenting became evident. This indicates the importance of participation and involvement of fathers in early intervention activities; therefore, early intervention services must enable fathers to participate as much as possible in sessions.

[Quality of Life in Children with Down Syndrome from Parental Point of View]. / Lebensqualität von Kindern mit Down-Syndrom aus Sicht der Eltern.

Quality of Life in Children with Down Syndrome from Parental Point of View Parents of 42 children with Down syndrome (mean age 9 years) report on their child's quality of life (physical, emotional and social domain). The KINDL-R was used as a proxy-report measure. Quality of life correlated negatively with behavioral symptoms (SDQ), but did not vary between children in mainstreamed or special schools. Regression analysis identified the child's behavioral symptoms and parental stress - assessed when the children had reached the age of five - as significant predictors of quality of life assessed four years later.

[Behaviour problems of children with Down syndrome in preschool-age - Results from the Heidelberg Down syndrome study]. / Verhaltensauffälligkeiten von Kindern mit Down-Syndrom im Vorschulalter.

Aims: We report on the frequency and the correlations of behaviour problems among children with Down syndrome in preschool-age. Method: As part of a longitudinal study 48 mothers of children with Down syndrome completed the German version of the "Strengths and Difficulties Questionnaire" (SDQ-D) and the Parenting Stress Inventory (PSI). The mothers were asked to fill out the questionnaires when the children had a mean age of five years. The results were compared to norms from children with typical development. Results: Thirty per cent of the children with Down syndrome were rated as abnormal. Specifically, mean scores indicating problems with children of the same age and hyperactivity were elevated. A regression analysis predicting the total problem score of the SDQ-D revealed maternal educational level, optimistic attitude, and subjective parental stress at the age of one year and the degree of behavioural abnormalities at the age of three years as significant influential factors. Conclusion: Early intervention for Down syndrome children should include supporting parenting competence and coping skills in order to prevent behaviour problems.

Preliminary Evidence Assessing Social-Emotional Competences in Deaf and Hard of Hearing Infants and Toddlers Using a New Parent Questionnaire.

Social-emotional competences are an important developmental domain for deaf and hard of hearing (DHH) children and early diagnosis of problems is needed to ensure that DHH children receive appropriate support in this domain. In order to explore the usefulness of an instrument, which was recently developed for very young children, two studies in DHH infants and toddlers were conducted from Germany using the Social-Emotional Assessment/Evaluation Measure (Squires et al. (2013). Social-Emotional Assessment/Evaluation Measure (SEAM). Baltimore, ML: Brooks). Preliminary analysis of data obtained from a sample of 182 DHH children aged between 2 and 36 months (Study 1) suggests that it provides valid, reliable data and is suitable for use in practice. The data also corroborate well-known findings from other research in deaf education, in particular the role of parental responsivity for the development of social-emotional competences. Study 2 documents the consistency of evaluations of 44 DHH children by their mothers and by early intervention providers using the scales. Overall, the results suggest that this new evaluation instrument has potential applications in deaf educational practice but further research is needed to demonstrate its full value.

[Risk factors for self-injurious, aggressive, and stereotypic behavior in children and youths with visual impairments]. / Risikofaktoren für selbstverletzendes, aggressives und stereotypes Verhalten bei Kindern und Jugendlichen mit Sehschädigungen.

Objective: To increase the limited knowledge concerning the form and risk factors of self-injurious, aggressive, and stereotypic behavior in children and youths with visual impairments. Method: Parents of 83 children and youths with visual impairments report on the characteristics of visual impairment, the social-communicative competence of their children, and the frequency and severity of self-injurious, aggressive, and stereotypic behaviors. Results: Stereotypic behaviors are reported more often than the other behavioral abnormalities. The frequencies of stereotypic and self-injurious behaviors are correlated with each other. Children with higher social-communicative competence received lower scores in stereotypic and self-injurious behaviors (range of correlation coefficients between ­.26 and ­.48). Furthermore, the developmental delay of cognitive and adaptive competence is associated with the frequency and severity of these self-injurious behaviors (F = 4.65, p = .012/F > 5.65, p < 0.01). For blind children, the parents describe a higher frequency and severity of stereotypic and self-injurious behaviors. The frequency of self-injurious behavior is lower for children in an integrative setting. Conclusions: Frequency and severity of stereotypic and self-injurious behavior varies with characteristics of the child's visual impairment and additional disabilities. This association is not supported for aggressive behaviors.

[Social-emotional competences in deaf and hard-of-hearing toddlers ­ results from an empirical study with two current parent questionnaires]. / Sozial-emotionale Kompetenzen hörgeschädigter Kleinkinder.

Objective: Hearing loss in the deaf and hard of hearing (DHH) is associated with an elevated risk of problems in socio-emotional development. Early assessment is necessary to start timely interventions. The present study tested two parent questionnaires that allow evaluation of the socio-emotional development of toddlers from a competence perspective. Method: 128 parents with DHH toddlers aged 18 to 36 months were asked to evaluate the development of their children and their own educational competences using two preliminary German adaptations of internationally well-known social-emotional assessment measures. Results: In addition to a series of results within the normal range, the data also reveal some specific problems in the socio-emotional development of children with hearing loss. DHH toddlers in particular show more problems developing empathic competences and maintaining relations with peers. DHH toddlers with additional handicaps have a higher risk of developing socio-emotional problems. Parental responsivity proves to be important regarding the development of socio-emotional competences in toddlers. Conclusions: The presented data strongly confirm results available from deaf research regarding the development and promotion of DHH children. The two questionnaires used in this study provide the opportunity to evaluate socio-emotional competences in DHH toddlers and to start appropriate interventions very early.

[Parenting Stress in Mothers of Children with Down Syndrome in Preschool Age]. / Erlebte Belastung von Müttern von Kindern mit Down-Syndrom im Vorschulalter.

Parenting Stress in Mothers of Children with Down Syndrome in Preschool Age Research suggests that parenting stress is elevated in parents of children with intellectual disabilities. However, data are inconsistent if this holds true for parents of children with Down syndrome. As part of the Heidelberg Down syndrome study, 52 mothers of children with Down syndrome (mean age: 5 years) completed the German adaptation of the Parenting Stress Index. These results show significantly elevated stress scores in scales measuring demanding and less acceptable behavior of the children (child characteristics). Scores in scales measuring parent characteristics do not differ significantly from the norms. Global stress scores are associated with the degree of behavioral problems (SDQ) and adaptive competence (VABS-II). A regression analysis points to optimism as a dispositional trait of the mother which makes a significant contribution to the prediction of parenting stress scores. The implications for early intervention are discussed.

[Social-Emotional Competence in Young Children with Hearing, Visual or Intellectual Impairments - an Explorative Study with the ITSEA]. / Beurteilung sozial-emotionaler Kompetenzen von Kleinkindern mit einer Seh- oder Hörschädigung oder einer drohenden geistigen Behinderung.

Social-Emotional Competence in Young Children with Hearing, Visual or Intellectual Impairments - an Explorative Study with the ITSEA Early emotional and social competence is considered as an important requirement for social participation in family and child care settings. We report on a study exploring the usefulness of the competence scales as a part of the "Infant-Toddler Social and Emotional Assessment" (ITSEA) for one- to three-year old children in a sample of 253 toddlers with hearing, visual or intellectual impairments. Internal consistency of the six scales is good (alpha > .86). An ANOVA reveals significant differences between the three groups and a correlation with additional disabilities. These explorative results support the development of a German standardization of the ITSEA.

[Caregiver Stress in Foster and Adoptive Parents of Children with Fetal Alcohol Spectrum Disorders]. / Familiäre Belastungen in Pflege- und Adoptionsfamilien mit Kindern mit fetalem Alkoholsyndrom.

Caregiver Stress in Foster and Adoptive Parents of Children with Fetal Alcohol Spectrum Disorders. Foster and adoptive parents of 71 children with fetal alcohol syndrome (FAS) report on developmental and behavioral characteristics, family stress, coping resources and their satisfaction with support. The data reveal an elevated rate of social and emotional problems in the children. In spite positive individual and social resources, the foster and adoptive parents feel a high level of caregiver stress. 30 % of them rate the support they receive from pediatric, therapeutic or educational services as lower than expected. Specifically, they miss early information on the diagnosis, professional knowledge and support for the special challenges of education and managing behavioral problems in their collaboration with social support agencies.

[Family experiences with the diagnosis of fragile X syndrome--results of a retrospective parental survey]. / Diagnosemitteilung beim Fragilen-X-Syndrom--retrospektive Befragung von Eltern.

Family X syndrome is the second most common inherited form of mental retardation. The suspected diagnosis is made on a characteristic behavioral phenotype and confirmed by genetic analysis. In a retrospective survey, 57 parents report on the process of diagnosis. The mean age of diagnosed children was 4;8 years. A majority of two thirds of parents stated that knowledge of the cause of the disorder was important to them. At the same time many parents felt the process was insensitive and missed specific information on developmental perspectives for their children. Most say they benefited from the national parent self-help group as an important resource of support. Conclusions for professional support for parents are discussed.

[Behavioral characteristics of children with Prader-Willi syndrome in preschool and school age: an exploratory study on ritualistic behavior]. / Verhaltenssymptome bei Kindern im Vorschul- und Schulalter mit Prader-Willi-Syndrom--eine explorative Studie zu ritualisierten Verhaltensformen.

Parents of 64 children and youths with Prader-Willi syndrome (PWS) describe their children's behaviour on the "Temperament and Atypical Behavior Scale" (TABS) and the German version of the "Developmental Behavior Checklist" (VFE). In the younger age group, there are no specific behavioural abnormalities which characterize a behavioral phenotype. In the older age group the data reveal elevated levels of abnormal behaviors (communication disturbance, social relations and disruptive behaviors). Parents stress ritualistic behaviors as especially challenging. The results concerning form and age-dependency of abnormal behaviors are discussed in the context of prevention and treatment options.

[Parental self-efficacy in family-centered early intervention]. / Zutrauen in die eigene Kompetenz als bedeutsames Merkmal familienorientierter Frühförderung.

Parental self-efficacy is seen as an important concern in family-centered early intervention. This article reports the data from 125 parents of young children with intellectual disabilities, hearing impairment or visual impairment. The relationship between parental self-efficacy, parental stress and several parent and child variables is analyzed. The results support the relevance of parental self-efficacy for parental coping. Some recommendations for promoting their experience of participation and partnership in early intervention services are discussed.

[Regulatory disorders as early indicators of mental health disorders in severely handicapped children]. / Frühe psychische Auffälligkeiten bei Kindern mit schwerer geistiger Behinderung.

OBJECTIVES: The present study examines regulatory dysfunctions and atypical behaviors in young children with various levels of intellectual disabilities. METHOD: Families were recruited from parent self-help groups. 133 mothers completed questionnaires on adaptive competence (VABS-II) as well as temperament and atypical behaviors (TABS). RESULTS: 58 % of the children were classified as having regulatory disorders. The TABS scores vary with the child's level of intellectual ability. 80 % of children with severe and profound intellectual disabilities were described as highly detached, 50 % as under-reactive and dysregulated. DISCUSSION: The results support the validity of the TABS for the assessment of very young children with intellectual disabilities. This group has an increased risk for psychological disturbances and should be included in early mental health screening and intervention services.

[Psychopathology in youths with intellectual disabilities--prevalence and prevention]. / Psychische Störungen bei Kindern und Jugendlichen mit geistiger Behinderung-Prävalenz und Prävention.

A survey of epidemiological findings suggests a significantly increased level of emotional and behavioural problems in children and youth with intellectual disabilities. Some biological and social factors are presented which contribute to this elevated risk for psychopathology. Assessment and intervention planning needs to acknowledge genetic dispositions, and limitations of the capacity of information processing which characterise children with intellectual disabilities. Early intervention may help to prevent emotional and behavioural problems by supporting a positive parent-child relationship, increasing the parents' educational competence and assisting preschool teachers in supporting positive relationships with peers, and promoting social competence.

[Perceived quality of life in mothers of young boys with fragile X syndrome]. / Familienbezogene Lebensqualität bei Müttern von Jungen mit Fragilem-X-Syndrom im frühen Kindesalter.

Quality of life has been conceptualized as a subjective view of one's feeling of well-being. There is evidence for restraints caused by parenting stress as well as resilience in mothers of children with an intellectual handicap. Specifically, we report on an investigation using the family-related life quality questionnaire (FLQ) in mothers of 26 young boys with Fragile X syndrome. Quality of life is affected by parenting stress as well as individual and social coping resources (hope as a personal trait and quality of family relationships). Child-related variables (age, adaptive competence) had no significant effect on perceived quality of life, child temperament and atypical behavior is related indirectly to maternal life satisfaction as a factor determining the degree of parenting stress.

[Mental health disorders among handicapped children and youth]. / Psychische Störungen bei behinderten Kindern und Jugendlichen--Ubersicht und Schlussfolgerungen für die Psychodiagnostik.

Data on the prevalence of mental health disorders among children and youth with hearing disorders, blindness, physical handicaps or intellectual disabilities are reviewed. Problems in parent-child relations and issues in the development of social competence and social participation are discussed as risk factors for emotional social maladjustment. The differentiation between developmental problems resulting from the handicap and mental health problems is a challenging task in practice. Some conclusions for psychopathological assessment of handicapped children and youth are presented.

[Autistic spectrum disorders in very young children: issues in the diagnostic process]. / Spektrum autistischer Störungen im frühen Kindesalter: Probleme der Beurteilung.

The diagnosis of very young children with autistic spectrum disorders and differentiating the disorder from mental retardation are difficult in the early years. Some efforts to improve diagnostic practice are reviewed. The usefulness of standardized behavioural rating scales, observation of core deficits in communication and play and parental reports are discussed in view of the author's experience with 13 children (2-4 years of age). Even in the case of diagnostic uncertainty, focussing early intervention on core symptoms of autism and supporting responsive parent-child interactions is recommended in order to prevent further social isolation of children with autistic features.

Analysis of intentional communication in severely handicapped children with Cornelia-de-Lange syndrome.

UNLABELLED: Intentional communicative acts were assessed in 13 children with Cornelia-de-Lange syndrome (CdLS) with a severe mental disability and compared to a control group of Down and 5p (Cri-du-Chat (CdC)) syndrome children. The mean number of intentional communicative acts were significantly lower. Analysis of play behaviors revealed that the differences were specific for the communicative domain. They are part of a general behavioral characteristic of CdLS children with a severe mental disability which can be described as a lack of communication, emotional reactions and motility. A syndrome-specific low rate of communicative initiatives indicates a special problem for designing intervention programs which depend on opportunities for facilitating strategies. LEARNING OUTCOMES: The reader will learn about the behavioral phenotype of CdLS, distinctive communication problems and qualities of play behavior which are relevant for planning educational interventions in children with this syndrome.