Children with profound and multiple learning disabilities (PMLD) present a particular challenge to those who work with them. The spread of multi-sensory environment centres in the UK is seen as a potentially important development. The initial emphasis of such centres was on the provision of leisure and pleasure in a secure, socially interactive situation. This chapter focuses on the current research in a multi-sensory environment. Ware argues that within the National Curriculum new aims need to be developed, as otherwise for year after year children are simply assessed as working towards the lowest level. She believes that when teachers work with children with PMLD they should be enabling them to participate as far as possible in what happens to them. The methods developed to study young infants, who lack control over most movements and have very limited means of communication, can also be used to study children with PMLD.

Objectives: Health morbidity in children and older adults with Down syndrome (DS) is relatively well established, but morbidity in young DS adults has not been specifically researched.Methods: This study undertook health assessments in 130 young adults with DS investigating physical, psychiatric, and access to services in a representative population of young adults with DS.Results: The study found a comparable prevalence of both physical and psychiatric morbidity in the young population with historically improved access to services, although further improvement was highlighted.Conclusion: The study highlighted the need for increased health surveillance in young adults who, similar to children and older adults with Down syndrome, are at risk of high rates of health morbidity.

•We used the Goodman SDQ with adults with Down syndrome.•Construct validity and reliability of the SDQ were acceptable.•Four factors were identified: Prosocial, Emotional difficulties, Hyperactivity and Conduct Problems.

Routinized and compulsive like behaviours (RCBs) have been described as important aspects of development seen universally in children, yet investigation is relatively scarce. One exception was the development of the Childhood Routines Inventory (CRI), which has prompted recent studies. The present study was a replication of the standardization for the CRI on a British sample and with an extended age range. It also explored possible associations with obsessive-compulsive disorder (OCD). The parents of 1,369 children (aged 2-11 years) completed the CRI, and an 8-item OCD scale for those 7 years and over. Socioeconomic status (SES) was measured by proxy post codes; 111 parents completed the questionnaire twice. The CRI had good internal consistency and test-retest reliability. There was a significant linear decline in RCBs with age; a minority of children continued to have high levels up to 11 years of age. Children designated at risk for OCD had higher CRI scores. Anxious behaviours reported by parents of children aged 7 years or over were associated with higher levels of RCBs. Factor analysis of the CRI identified three factors: "Repetitive", "Just Right" and "Sensitivity".

Background There is little research on issues related to menstruation for women with Down syndrome, yet they may experience menstruation in a qualitatively different way from normal women, which impacts on their quality of life and that of their families and carers. The aim of this qualitative study was to explore issues with the women and/or their carers.Method Face‐to‐face or telephonic interviews were carried out with six women with Down syndrome, and 53 mothers of women with Down syndrome.Results The range in age and pattern of menses was similar to that of the general population. Around two‐thirds of the women were coping with the self‐care aspects with limited help. Heavy periods were an issue for around one‐third. Use of tampons was rare, yet several women had problems with pads. Some mothers were unaware how much their daughter knew about the menstrual cycle; others deliberately withheld information.Conclusions Lack of information and preparation, heavier periods for some and reluctance to use tampons, all indicated specific issues for these women. Establishing routines was helpful and could have been applied to more of the women. Further research is suggested into heavy periods and other possible interventions.

On Sept 16, UK television's Channel 4 News featured an "exclusive" and "shocking" report that, after positive serum or ultrasound screening for Down's syndrome, diagnostic testing by amniocentesis or chorionic villus sampling results in two healthy babies being miscarried for every three Down's syndrome births prevented. 1 Channel 4 News. Exclusive: research suggests Down's screening risk is 'unacceptable'. http://www.channel4.com/news/articles/society/health/exclusive+research+suggests+downs+screening+risk+is+unacceptable/2455752Date: Sept 16, 2008 Google Scholar The findings (published early online to coincide with the broadcast) are from an editorial by Frank Buckley and Sue Buckley, Chief Executive and Chief Scientist of Down Syndrome Education International (DSEI), respectively, in Down Syndrome Research and Practice. 2 Buckley F Buckley S Wrongful deaths and rightful lives—screening for Down syndrome. Down Syndrome Res Pract. 2008; (published online Sept 16, (accessed Oct 21, 2008).)https://doi.org/10.3104/editorials.2087 Crossref Scopus (30) Google Scholar In this editorial, data from the National Down's Syndrome Cytogenetic Register (NDSCR) 3 National Down Syndrome Cytogenetic RegisterThe National Down Syndrome Cytogenetic Register 2006 annual report. http://www.wolfson.qmul.ac.uk/ndscr/reports/NDSCRreport06.pdfDate: 2008 Google Scholar on prenatal and postnatal diagnoses of Down's syndrome and on terminations were analysed; fetal losses in pregnancies unaffected by Down's syndrome were estimated by statistical modelling because national data on losses in non-affected pregnancies were not available. The editorialists used the findings to query whether prenatal screening for Down's syndrome was justifiable. The editorial was circulated widely to the mass media and to international Down's syndrome associations. 4 Down Syndrome Education InternationalMore people with Down syndrome are being born, achieving more and living longer than ever. http://blogs.downsed.org/press/2008/09/index.htmlDate: Sept 16, 2008 Google Scholar Costs of prenatal genetic screeningIn their Comment in this week's issue (p 1789),1 Jennifer Wishart and colleagues make several mistakes. Editorials in Down Syndrome Research and Practice are usually written by editorial staff and (as a matter of clear policy) not reviewed. In this instance, however, we volunteered drafts for wide comment. We received advice from Editorial Board members and several expert external reviewers. This independent review process concluded with a clear consensus supporting publication. Full-Text PDF

First-trimester non-invasive diagnostic testing may be available within 5–10 years. 14 Prenatal screening is of major scientifi c and clinical interest, and potentially aff ects 650 000 women per year in the UK alone. Published as an editorial, and without independent peer review, the analysis lacks the necessary authority to assist people in making personal decisions about screening and diagnosis, including families who already have a child with Down’s syndrome. It also distracts attention from the need for increased funding for Down’s syndrome research and for reassessment of research priorities within this fi eld. 15

Routinized and compulsive-like behaviors (RCB) are common in typically developing children and in children and adults with Down syndrome, but what functions do they serve? Parents completed questionnaires for RCB, behavior problems, and adaptive behaviors. Children who had Down syndrome had significantly higher levels of RCB than did the typically developing children at all MAs; RCBs were positively associated with adaptive behaviors for younger MA and CA groups, but not older MA children and all adults with Down syndrome. For children with Down syndrome and MAs over 5 years and all adults, RCBs were associated with behavior problems. We concluded that RCBs support developmental progress for all children with MAs less than 5 years, but may have different functions for older individuals.

Only a limited amount is known about the childbirth experiences of m thers with disabilities and even less about the experiences of midwives providing such services. To obtain details about experiences semi-structured interviews were carried out with five mothers with mobility limiting disabilities and eight midwives. The five themes from mothers: The quest for normality and independence, the disability as paramount, midwives’ lack of disability knowledge, the need for midwives to have disability awareness and positive attitudes, and the importance of effective communication. Three themes from the midwives were: The midwives’ varied knowledge and experiences and how this influenced their feelings, midwives generally positive attitudes towards the mothers, and challenges to effective communication. Midwives need the opportunity to enhance their knowledge and helping skills whilst taking a proactive approach to care and maternity service provision for this small but increasing group.

This study explored the self‐understanding of 77 young people with Down syndrome aged from 17 to 24 years, with verbal mental ages ranging from less than 2 years 6 months to 12 years 4 months. The aim was to determine whether the self‐understanding of these young people followed a typical developmental pathway, whether they were making social comparisons to others, and if these comparisons were downward, upward or lateral. The data came from interviews with the young people and with their parents. Results confirmed the typical developmental progression in so far as relative comparisons to others were only made by those with significantly higher mental ages. These young people made more downward than upward comparisons, whereas parents largely referred to lateral comparisons. This again is similar to findings with people in general who tend to maintain their self‐esteem by making downward comparisons. Aspirations were age appropriate, albeit with relatively low levels of cognitive understanding. Reference groups predominantly consisted of families and other young people with intellectual disabilities.

The limited literature on awareness of differences and stigma in people with intellectual disabilities is largely sociological, emphasises pathology, and has rarely used a developmental perspective with representative samples. Interviews, photographs and standardised tests were used to investigate such awareness with 77 young adults with Down syndrome and their parents. Awareness and social categorisation were significantly associated with verbal mental age, and closely approximated the typical social‐cognitive developmental sequence. No associations were found between awareness and chronological age, parent telling, gender, and mainstream experience. Only those with verbal mental ages from around 8 years were making relative social comparisons and beginning to form complex social categories of Down syndrome/disability. Around 13% were rated as showing a negative emotional reaction to Down syndrome/disability, and most of these were male. A similar percentage, mostly female and with higher verbal mental ages, discussed concerns and limitations. Even so, they all had high self‐esteem and awareness of Down syndrome and disability did not appear to be a major issue. A number of coping mechanisms to maintain a positive sense of self were suggested. It is argued that both sociological and developmental models are required to inform parent and professional attempts to facilitate self‐awareness.

Surviving events that have posed a serious threat to life can result in major psychological problems during the recovery period. Younger patients, with years of life ahead of them, are at risk of depression and loss of self-esteem following their ordeal, despite their physical recovery. Traditional forms of counselling and psychotherapy following traumatic events can sometimes carry a stigma and be viewed as 'disease centred'. Reminiscence and life review therapies, used until now, with the elderly, appear to have valuable transferable benefits to younger survivors of critical illness. Life review and reminiscent interventions are holistic and person centred, techniques resonating with the essence of critical care nursing. Life review and reminiscence can be used therapeutically from an early stage to help minimize the negative psychological effects of being critically ill.

There continues to be a steady growth in the published literature regarding issues for individuals with Down syndrome. This review highlights recent articles that contribute to the present scientific knowledge of the family, social, behavioural and health issues affecting both children and adults with Down syndrome. (C) 2001 Lippincott Williams & Wilkins.

Chapter 3 Self-Regulation in Children and Young People with Down Syndrome Sheila Glenn, Sheila GlennSearch for more papers by this authorCliff Cunningham, Cliff CunninghamSearch for more papers by this author Sheila Glenn, Sheila GlennSearch for more papers by this authorCliff Cunningham, Cliff CunninghamSearch for more papers by this author Book Editor(s):Monica Cuskelly, Monica Cuskelly University of QueenslandSearch for more papers by this authorAnne Jobling, Anne Jobling University of QueenslandSearch for more papers by this authorSusan Buckley, Susan Buckley University of PortsmouthSearch for more papers by this author First published: 01 December 2001 https://doi.org/10.1002/9780470777886.ch3 AboutPDFPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShareShare a linkShare onFacebookTwitterLinked InRedditWechat Summary This chapter contains section titled: I: Mastery motivation II: Private speech Implication for practise and further research References Down Syndrome Across the Life Span RelatedInformation

There continues to be a steady growth in the published literature regarding issues for individuals with Down syndrome. This review highlights recent articles that contribute to the present scientific knowledge of the family, social, behavioural and health issues affecting both children and adults with Down syndrome.

ABSTRACT This paper reviews selected British studies over the past 35 years with respect to: (a) the numbers of children with Down syndrome attending different types of preschool facilities and schools, and (b) any evidence for progress in the different types of school. It concludes that there has been a significant shift in attendance from schools for children with severe learning disability, to those for moderate learning disability, to mainstream. This is mainly associated with changes in attitude towards children with Down syndrome and local education authority (LEA) policy on integration. Within the support given at the time of the studies, estimates indicate that approx. 70‐80 per cent of children with Down syndrome could commence their educational careers in integrated or mainstream facilities, approx. 35‐40 per cent could be expected to complete their primary education in mainstream schools and approx. 20‐25 per cent in secondary mainstream schools. However, some LEA areas are reporting much higher percentages at primary age which may result in more children at the secondary level, particularly in resourced schools. In terms of measures of academic attainment and self‐sufficiency, there is little evidence to show that attending special schools is more beneficial than mainstream schools in the preschool and primary years; what evidence there is, indicates more advanced progress in mainstream settings.