New on Down Syndrome Online

Overview books on motor and social skills available online

Two more books on social skills and motor skills from DownsEd's authoritative Down Syndrome Issues and Information education series are now available for free online on Down Syndrome Online.  

The books newly available online are:

• Social development for individuals with Down syndrome - An overview
• Motor development for individuals with Down syndrome – An overview

Additional Down Syndrome Issues and Information books will be published online over the coming months. Subscribe to the New on Down Syndrome Online news feed or sign up for email updates to stay informed.

Number and mathematics books now available for free online

Three books on number skills development for children with Down syndrome from birth through teenage years are now available for free online on Down Syndrome Online. These books are from DownsEd's authoritative Down Syndrome Issues and Information education series.

The books newly available online are:

• Number skills for infants with Down syndrome – 0-5 years [Open Access Full Text]
• Number skills for children with Down syndrome – 5-11 years [Open Access Full Text]
• Number skills for teenagers with Down syndrome – 11-16 years [Open Access Full Text]

The Number skills overview is already available for free online.

Additional Down Syndrome Issues and Information books will be published online over the coming months. Subscribe to the New on Down Syndrome Online news feed or sign up for email updates to stay informed.

Books on speech and language now available for free online

Three books on speech and language development for children with Down syndrome from birth through teenage years are now available for free online on Down Syndrome Online. These books are from DownsEd's authoritative Down Syndrome Issues and Information education series.

The books newly available online are:

• Speech and language development for infants with Down syndrome – 0-5 years [Open Access Full Text]
• Speech and language development for children with Down syndrome – 5-11 years [Open Access Full Text]
• Speech and language development for teenagers with Down syndrome – 11-16 years [Open Access Full Text]

The Speech and language development overview is already available for free online.

Additional Down Syndrome Issues and Information books will be published online over the coming weeks. Subscribe to the New on Down Syndrome Online news feed or sign up for email updates to stay informed.

Down Sydrome Online's open access policy praised by The Institute for Research and Innovation in Social Services

The Institute for Research and Innovation in Social Services has praised Downsed's websites for providing open access to "a mass of material that will enrich the learning of anyone interested in Down Syndrome".

Easy and free access to high quality information

Down Syndrome Education International updated the design and content of its websites during summer 2008 in order to simplify navigation and to introduce a cleaner layout. The update also paved the way for the release of new online editions of the Down Syndrome Issues and Information education series.

Using the latest technologies

In its regular 'Webwatch', the Learning Technology Team at The Institute for Research and Innovation in Social Services (IRISS) has commended the Down Syndrome Online for prodividing a "rich seam of educational, research and training resources", including the "excellent" Down Syndrome Issues and Information publications.

The review draws particular attention the open access periodical Down Syndrome Research and Practice:

"Most notable however, and reason enough to make this website of the month, is the open access peer-reviewed journal Down Syndrome Research and Practice. This multidisciplinary journal – the official journal of the European Down Syndrome Association - publishes high quality 'news, reviews and peer-reviewed scientific papers of importance to the quality of life of people with Down syndrome.' DownsEd International recently adopted an open access policy for the journal and all issues - from the first issue in 1993 – are available online. This is a highly commendable stance and we hope it encourages other social care organisations to adopt a similar open access policy."

Future developments

DownsEd is particularly proud of the comments from IRISS, as its websites are developed and hosted in-house. As noted in the IRISS review, the websites are still undergoing further development and improvements to continue to best meet the needs of families, professionals and researchers worldwide.

More information

Read the full Institute for Research and Innovation in Social Services review at http://www.iriss.ac.uk/node/675

The use of Ginkgo, Prozac and Focalin as a "treatment" for Down syndrome

A combination of drugs recommended for depression and attention deficit and hyperactivity disorder is being widely promoted as a "treatment" for Down syndrome. There is no scientific support for the routine use of this protocol by people who have Down syndrome. It is important that families and healthcare professionals are aware of the lack of evidence for safety and benefits from use of this protocol.

Clinicians, scientists and Down syndrome groups across the world have issued a statement about the use of a protocol that is claimed to improve intelligence and behaviour for people with Down syndrome.

Published on Down Syndrome Online today, the statement provides information about the protocol for families and healthcare professionals seeking to evaluate these claims. The statement concludes that there is no reliable evidence of benefit and no clear evidence of safety to support the use of this protocol.

Over 20 clinicians and scientists and 17 organisations have publicly endorsed the statement, offering a clear indication of the wide consensus cautioning families about the risks of the unproven therapy.

Read the statement in full:

• The use of Ginkgo, Prozac and Focalin as a "treatment" for Down syndrome
• La utilización de Ginkgo, Prozac y Focalina como "tratamiento" para el síndrome de Down
• Der Einsatz von Ginkgo, Fluoxetin (Prozac) und Focalin als „Behandlung“ beim Down-Syndrom
• L’utilisation de Gingko, Prozac et Focalin comme « traitement » dans la trisomie 21 (syndrome de Down)

Memory and learning – using mouse to model neurobiological and behavioural aspects of Down syndrome and assess pharmacotherapeutics

This paper by Katheleen Gardiner reviews the challenges inherent in using mouse models in Down syndrome research and then describes the successful molecular/genetic interventions that are cause for cautious optimism. The paper also predicts critical molecular abnormalities that can be tested for relevance to learning and memory and that are potential targets of existing pharmacotherapeutics. Read full article at: http://www.down-syndrome.org/reviews/2096/

Teaching spontaneous responses to a young child with Down syndrome

Spontaneity is an area of expressive language in children with Down syndrome that has received little attention in the literature. Nonverbal stimuli to which children emit spontaneous utterances do not include explicit adult vocalisations, rather the important features may include nonvocal components (e.g., a bird flying) or the action of another person (e.g., presenting a new toy). In this study, Kathleen Feeley and Emily Jones examine an intensive behavioural intervention to teach spontaneous responses to a child with Down syndrome. Read full article at www.down-syndrome.org/case-studies/2007

Folate metabolism and the risk of Down syndrome

Folate is an important vitamin that contributes to cell division and growth and is therefore of particular importance during infancy and pregnancy. Folate deficiency has been associated with slowed growth, anaemia, weight loss, digestive disorders and some behavioural issues. Adequate folate intake around the time of conception and early pregnancy can reduce the risk of certain problems including neural tube defects. It has been suggested that certain versions (polymorphisms) of some genes can increase the risk of conceiving a baby with Down syndrome. If this is the case, then people with Down syndrome may be more likely to carry these forms of these genes and to experience associated problems in folate metabolism. Studies to date have found conflicting results, suggesting that these gene variants may be part of a more complex picture. In this issue, a further study reports no association between the presence of a common polymorphism of one of these genes and the risk of having a child with Down syndrome among mothers of Northern Indian origin. In this article, David Patterson reviews these challenging findings and looks at where investigations can now go to resolve these issues. Read full text at www.down-syndrome.org/updates/2051

Modelling Down syndrome

Animal models are extensively used in genetics, neuroscience and biomedical research. In this article, Frank Buckley describves recent studies that illustrate the usefulness and the challenges of research utilising genetically engineered mice to explore the developmental biology of Down syndrome. These studies highlight many of the issues at the centre of what we understand about Down syndrome, and may one day point to useful ways to improve quality of life for people living with Down syndrome. Full text available at www.down-syndrome.org/updates/2054

The power of behavioural approaches – we need a revivial

Behavioural approaches can be used very effectively to teach new skills and to change behaviours that are challenging and not socially adaptive. In this article, Sue Buckley darws on several studies to argue that whilst these approaches may have gone out of fashion, they should be revived. Full text available at www.down-syndrome.org/updates/2038

It is time to take memory training seriously

It has been known for a long while that children with Down syndrome have specific impairments in verbal shortterm memory. In this Update article, Sue Buckley describes research that indicates that memory training activities may be effective. Full text available at www.down-syndrome.org/updates/2092

Special at school but lonely at home: An alternative friendship group for adolescents with Down syndrome

After a decade of inclusion and structured school programmes to facilitate friendships, many parents report that peer relationships end after school hours. In this article, Jeanne D'Haem summarises the results of her study comparing the efficacy of two school based friendship groups with a mixed age home based group. The home-based mixed age friendship group did result in significant friendships. The school-based friendship groups of adolescent peers were not successful in developing friendships for individuals with Down syndrome. When a multi-age group was conducted outside of the school, friendships formed and have continued for over two years. This article describes how and why parents and professionals should look beyond school based same age peer friendship groups and consider a community circle of mixed-age friends. Full text available at: www.down-syndrome.org/practice/2012

Handling the transfer to secondary school

The transfer from primary to secondary education can be an anxious time and planning ahead can help. This article by teacher Elaine Bull offers practical advice about what to consider, when to start planning and discusses many of the issues involved in the transition to later schooling. Written from the perspective of the English school system, many of the issues and principles are broadly applicable. Full text available at: www.down-syndrome.org/practice/2016

Review of Singing Hands CD resources

A review by Julie Hughes of the Singing Hands Book of Songs and Song Time CD, Volumes 1 & 2. Full review available at: www.down-syndrome.org/resources/2082

Review of activities for babies with Down syndrome video

This article by Sue Sillitoe, first published in Nursery World magazine, reviews the Development in practice - Activities for babies with Down syndrome DVD video published by Down Syndrome Education International. Full article available at http://www.down-syndrome.org/resources/2061

Review of preschool speech and language video

Two reviews of the Development in practice - Speech and language activities for preschool children with Down syndrome, a video produced by Down Syndrome Education International. The reviews are by Leela Baksi of Symbol UK Ltd and Kate Freeman of I CAN. Full reviews available at www.down-syndrome.org/resources/2089

Prevalence of MTHFR C677T polymorphism in north Indian mothers having babies with Trisomy 21 Down syndrome

Recent studies have evaluated possible links between polymorphisms in maternal folate metabolism genes and Down syndrome. Some of these studies show a significantly increased prevalence of the C677T polymorphism of the 5,10-methylene tetrahydrofolate reductase (NADPH ) gene (MTH FR) among mothers who have had babies with Down syndrome. This study by Kohli and colleagues examined the prevalence of the MTH FR C677T polymorphism among 104 north Indian mothers of babies with Down syndrome and 109 control mothers. Full article available at: www.down-syndrome.org/reports/2004

Medical issues among children and teenagers with Down syndrome in Hong Kong

This article examines the prevalence of medical problems in children and teenagers with Down syndrome in Hong Kong, based on a review of medical records of over 400 individuals aged 0-17 years. The prevalence of medical problems was high in children and teenagers with Down syndrome in Hong Kong and similar to previous findings elsewhere. Cardiovascular problems were observed in 216 (53%), endocrine problems in 111 (27%), gastrointestinal problems in 46 (11%), haematological problems in 18 (4%), neurological problems in 27 (7%), sleep problems in 36 (9%), skeletal problems in 56 (14%), visual problems in 195 (48%) and auditory problems in 137 (34%). Full article available at: www.down-syndrome.org/reports/2005

Precise descriptions of Down syndrome

This article discusses two recent research papers reporting on the behavioural phenotype (or specific profile of strengths and weaknesses) associated with Down syndrome. Full article available at: www.down-syndrome.org/research-highlights/2042

Cholesterol and Alzheimer type dementia among adults with Down syndrome

This article presents a summary of research by Warren Zigman and colleagues investigating the link between cholesterol levels and Alzheimer type dementia among adults with Down syndrome. Full article available at: www.down-syndrome.org/research-highlights/2052

Families and schools influence academic achievements

In this article, Sue Buckley summarises research by Stephen Turner and colleagues which identifies both school and parental factors that influence the academic progress of children with Down syndrome through to their adult lives. Full text available at: www.down-syndrome.org/research-highlights/2091

Families of children with Down syndrome: What we know and what we need to know

This Review presented at the Down Syndrome Research Directions Symposium 2007 provides an overview of what is currently known about families of children with Down syndrome. In addition, it highlights a number of issues that require further research if we are to have a thorough understanding of the impact of a child with Down syndrome on families as a system and on the individuals who make up that system. Full text available at: http://www.down-syndrome.org/reviews/2079/

The developmental approach to the study of Down syndrome: Contemporary issues in historical perspective

This Review, presented at the Down Syndrome Research Directions Symposium 2007, considers how the developmental approach provides an essential framework for understanding Down syndrome. Paradoxically, this framework both narrows and broadens the scope of research in the field. The narrowing involves a more fine-tuned approach to diagnosis, a more precise delineation of skill in relation to specific aetiology and developmental level, and fine-tuned matching strategies that involve comparisons on specific aspects of functioning. The broadening of the scope involves the consideration of the “whole child” in terms of personality, social, and emotional development, within the context of families, communities, and societies. This far-reaching developmental perspective revolutionised the study of intellectual disabilities with its theoretical, methodological, and interpretive innovations, while this more precise approach to the study of persons with intellectual disabilities in turn served to transform developmental theory by challenging, extending, and reconceptualising well-established developmental principles. Full text available at: http://www.down-syndrome.org/reviews/2081/

The Down syndrome behavioural phenotype: Taking a developmental approach

Individuals with Down syndrome are predisposed to show a specific behavioural phenotype, or a pattern of strengths and challenges in functioning across different domains of development. In this Review presented at the Down Syndrome Research Directions Symposium 2007, it is argued that a developmental approach to researching the Down syndrome behavioural phenotype, including an examination of the dynamic process of the unfolding of the phenotype, will advance science and service for this population. Related issues including the distinction between primary and secondary phenotypic features, heterotypic continuity, and methodological implications are discussed. Full text available at: http://www.down-syndrome.org/reviews/2069/

Speech production in people with Down syndrome

There is a well developed literature on the development of vocabulary and grammar in children with Down syndrome but limited information in the area of speech production. The spoken language of people with Down syndrome often leads to a lack of intelligibility which does not necessarily diminish with age, despite slow but steady development of phonology. This Review presented at the Down Syndrome Research Directions Symposium 2007 explores some of the elements in speech production which may contribute to the listeners’ perception of reduced intelligibility in the speech of people with Down syndrome. Full text available at: http://www.down-syndrome.org/reviews/2075/

Number and arithmetic skills in children with Down syndrome

It is clear that arithmetic and number skills are areas of particular difficulty for individuals with Down syndrome. Studies of arithmetic development in typically developing children suggest that a pre-verbal “number sense” system and counting skills provide two critical foundations for the development of arithmetic. Studies of children with Down syndrome suggest that the development of both these foundational skills present difficulties for them, though these conclusions are based on relatively small samples of children. It would seem that further studies of arithmetic and number skills in children with Down syndrome, involving larger samples of children and broader ranges of measures, are badly needed. Full text available at: http://www.down-syndrome.org/reviews/2070/

Social and communicative functioning

It is widely acknowledged that the establishment of positive attachment relationships and communication with primary caregivers is an important outcome of social-emotional development in early childhood. Attachment security and communication abilities are also associated with key developmental achievements later in childhood, and indeed across the life-span. Research conducted with children with Down syndrome suggests that although differences in attention regulation and emotional responsivity may modify the developmental processes in some respects, the general patterns are similar to those in typically-developing children. It is known from research in this latter population that sensitivity and ‘mind-mindedness’ in caregiving are of key importance, as is the development of shared attentional focus. The authors of this Review argue that targeted research to identify the ways in which parents can most effectively support these core functions in the early development of children with Down syndrome should be a priority. Full text available at: http://www.down-syndrome.org/reviews/2073/

Memory and neuropsychology in Down syndrome

This Review, presented at the Down Syndrome Research Directions Symposium 2007, outlines the strengths and weaknesses in both short-term and long-term memory in individuals with Down syndrome, and the implications of these patterns for both other aspects of cognitive development and underlying neural pathology. There is clear evidence that Down syndrome is associated with particularly poor verbal short-term memory performance, and a deficit in verbal short-term memory would be expected to negatively affect aspects of language acquisition, particularly vocabulary development. Individuals with Down syndrome also show impaired explicit long-term memory for verbal information, and may also have particular problems in explicit long-term memory for visual-object associations. However, implicit memory appears to be less affected in Down syndrome, and may therefore provide an important basis for intervention approaches. These findings are consistent with the suggestion of dysfunction within the hippocampal system in Down syndrome, and problems in verbal memory may be linked to impaired functioning of pre-frontal brain regions. Full text available at: http://www.down-syndrome.org/reviews/2068/

How relationship focused intervention promotes developmental learning

Relationship focused intervention (RFI) is an early intervention model that encourages parents to engage in highly responsive interactions with their children. The purpose of this Review paper presented at the Down Syndrome Research Directions Symposium 2007 is to address the conceptual underpinnings for RFI. It discusses the process of developmental learning based upon brief observations of three children with Down syndrome playing by themselves. The authors observe that the most salient characteristic of children’s play is the extent to which they practise or repeat the developmental behaviours that characterise their current developmental functioning. Although children’s developmental functioning is assessed by their new and emerging developmental skills, consistent with Piaget’s concept of assimilation, children’s developmental learning appears to be highly dependent upon massive amounts of spontaneous practice of their existing developmental behaviours. In addition the authors review data from descriptive and intervention studies that they recently published which indicate that parental responsive interaction enhances children’s spontaneous activity, and that children’s spontaneous activity is correlated with their rate of development. The authors conclude that RFI enhances children’s development less by teaching the skills and behaviours that characterise higher levels of developmental functioning and more by encouraging children’s assimilative learning which results from their practising and repeating the developmental behaviours they have already learned. Full text available at: http://www.down-syndrome.org/reviews/2067/

Creating support for families of children with Down syndrome with a co-diagnosis: A survey

This Review, presented at the Down Syndrome Research Directions Symposium 2007, summaries whait is known about creating support for families with Down syndrome with co-diagnosis. Little is known about the effects on families of having a child with Down syndrome and an additional diagnosis (co-diagnosis). In fact, little is known about the incidence of specific co-diagnoses or the methods of reaching these diagnoses. However, there is an interest in improving diagnostic tools and support mechanisms for people with Down syndrome who have a co-diagnosis such as autism spectrum disorder, attention deficit disorder (ADD), obsessive-compulsive disorder (OCD), or other behavioural and medical diagnoses. Full text available at: http://www.down-syndrome.org/reviews/2071/